The Power of Arts-Based Methods for Knowledge Production and KT

By Dr. Roberta L Woodgate

Increasingly, researchers are using arts-based methods (e.g., drawing, music, dance, theatre, photovoice) in combination with qualitative methods (e.g., informal interviews, participant observation) to illuminate the human dimensions of health and illness in knowledge production and translation.

Using arts-based creative methods of inquiry gives children and youth a means of expressing their voice, one that has been missing from health research aimed at understanding their experiences. For example, in my Canadian Institutes of Health Research (CIHR)-funded study entitled “Youth Voices: Their Lives and Experiences Living with an Anxiety Disorder,” I combined photovoice with open-ended interviews to understand from youths’ perspectives what it is like to be a youth living with anxiety. Photovoice, an arts-based participatory method, involved them taking photographs to document and reflect on issues that are meaningful to them and then to talk about those photographs.

Photovoice was a powerful tool for amplifying the voices of youth in the study and helped to bring creative insights to the research. Young people shared with us that living with anxiety has left them feeling alone, feeling judged and at times out of control. Young people also shared with us that stigma often prevents them from sharing their experiences or seeking the help or support they may need.

“This one is a picture of what anxiety sort of looks like in my head…It looks like a monster (chuckle)….Um but it’s like; I don’t know it just looks like a monster… Especially when you’re not, you don’t have any skills to deal with anxiety yet, it’s just a big bad scary monster… If I go without anxiety for a long time it will be like the monster is coming back to me…. This is why people with anxiety are scared of their own anxiety, because anxiety is a monster.” — Female, 18 years old

“So you kind of feel like kind of like you’re not living the way that you could and the way that everyone around you is, so it’s kind of like its showing like, like so the dead grass is the person or people with anxiety and then the living grass all around them is like everyone else and like how they see it and they’re like, you feel like jealous because you wish that life was like easier for you and how it’s like easy for everyone else or easier or whatever and, and like I, I don’t like saying that because um like that’s me assuming that a certain person has it easy, but uh I know at least everyone has like one aspect of their life that’s easier than mine.” Female, 14 years old

“Cause, because of the stigma, you know like people associate people with schizophrenia as psychotic killers, but they’re not their illness. And there’s a wide, wide like variety of like what the illness does to you.” Female, 17 years old

Knowledge Translation Strategies

For one of the knowledge translation (KT) strategies for this study on youth living with anxiety, we created a series of video vignettes representing dance interpretations of some the study’s themes. The video vignettes revealed meaningful interpretations of the young people’s experiences, creating the potential for enhanced empathy and understanding, and reduced stigma for young people living with anxiety. The use of arts-based KT strategies affords the opportunity to communicate the experiences of young people living with anxiety to a wider audience of policy makers, health care practitioners, researchers, as well as the general community. (Note: the videos are also available in French and Cree).

In my CIHR-funded study that looked at the participation experiences of families of children with complex care needs, families shared their experiences through interviews and taking photographs. Families in the study reinforced that it was important for the general public to hear more about their experiences which led to the creation of 8 digital stories. Digital storytelling affords individuals the opportunity to tell their story through digital media that can involve the combination of photographs, video, animation, sound, music, text, and narrative voice. Each of the videos created represents a specific aspect of the families’ lives. In Being Known, families spoke about the importance of being known — for both themselves and their child. In Knowing your Child, families shared the challenges that came when their child had difficulties in communicating with others, as well as the intense nature of parenting in Knowing the Work Parents Do. Families shared some of their experiences with navigating the health care and other social systems in If Only we Knew as well as some of their experiences with stigma in If Only People Knew. Families spoke powerfully about the importance of Meaningful Participation in society and the ways in which Inclusive Landscapes could help their child feel included in society. Overall, families spoke of the importance of Having a Life, even if that life was different from that which is considered typical, and the ways in which inclusion and belonging for themselves and their child was critical for their well-being.

In another CIHR-funded study that sought to provide a deeper understanding of the challenges faced by children living with cancer, I actively engaged children’s imaginations through the use of a computer-drawing tool. Children participated in individual open-ended interviews and also had the opportunity to journal their experiences in a computerized drawing tool. Use of the drawing tool had significant therapeutic value for assisting children with cancer to explore, understand, and manage their physical suffering, as well as the associated anxiety they live with. For example in the figure below, one 14-year-old girl with osteosarcoma drew this picture in during a time when she felt consumed by her symptoms and when she existed in a space that separated her from all around her.

Consumed and Isolated

Trapped

In another example, this 17-year-old girl with leukemia experienced life as a prisoner as reveled by her picture and quote,

“The time when just sitting in my hospital room, just doing nothing, and it was a sense of freedom almost except I mean I’m stuck. I couldn’t really go anywhere and it was actually those days were probably the hardest during the first two or three in hospital each time, I mean, at the very beginning, it was the hardest. Like I knew I was kind of stuck. It feels like you can’t get out. You’re not allowed as a child in this hospital to go off on your own. You are grounded.”

Drawing pictures about their feeling states allowed children to have a conversation with themselves about their cancer experiences. The drawing tool was found to be particularly beneficial in assisting children to express their feelings symbolically, which they had previously been unable to articulate in words. For example, soon after entering this study, one participant explained that drawing in the tablet had finally allowed her to ‘‘get it all out.’’

Symbolic forms of communication such as drawing may be particularly beneficial in engaging children and youth to express their lived experiences in research.

Have you used arts-based methods for knowledge production and KT? Share your experiences in the comment box below or tweet us @KnowledgeNudge

About the Author

Dr. Roberta L Woodgate is a professor in the College of Nursing at the University of Manitoba and a Tier 1 Canadian Research Chair in Child and Family Engagement in Health Research and Healthcare. Her research program, IN•GAUGE, embraces a dynamic approach to: involve children, youth and families; interact with researchers and knowledge users in the research, intervention and evaluation process; and be innovative in the use and exchange of knowledge with the combined goal of improving health care and access to care for children and youth.