From informed consent to dissemination: Using participatory visual methods with young people with long-term conditions at different stages of research

Abstract

Research with young people suffering from a long-term illness has more recently incorporated the use of visual methods to foster engagement of research participants from a wide age range, capture the longitudinal and complex factors involved in young people's experiences of care, and allow young people to express their views in multiple ways. Despite its contributions, these methods are not always easy to implement and there is a possibility that they might not generate the results or engagement initially anticipated by researchers. We hope to expand on the emerging discussion on the use of participatory visual methods by presenting the practical issues we have faced while using this methodology during different stages of research: informed assent/consent, data collection, and the dissemination of findings. We propose a combination of techniques to make sure that the research design is flexible enough to allow research participants to shape the research process according to their needs and interests.

Children and young people’s participation in developing interventions in health and well-being: a scoping review

“…Such methods could for example include drawing, painting, writing [ 72 ], theatre [ 73 ], photography, filming [ 74 ] workshops, storytelling using software and digital tools, and mapmaking [ 73 ]. Using such methods at different stages in the research process does not in itself guarantee a participatory approach [ 74 , 75 ], but they can promote the participants’ sense of control and thereby enable them to take a more active part in the research process [ 73 ]. Methodology in itself can thus push a traditional top-down research paradigm in a more egalitarian direction [ 73 ] and increase credibility and reduce potential biases by triangulating different data sources [ 76 ].…”

Using photo-elicitation to explore perceptions of physical activity among young people with cystic fibrosis

“…Photographs can also evoke a myriad of memories and emotions that can be retrieved and accessed by both participants and researchers during the interview, but also by audiences during dissemination. Photo-elicitation has been used to study the perceptions and experiences of young people [32], people with chronic conditions [18, 34, 35] and in relation to eating behaviors [36], exercise behaviors [37] and physical culture [28, 38]. As such, photo-elicitation will be a useful approach to explore the experiences of physical activity among young people with CF.…”

Qualitative Research for One Health: From Methodological Principles to Impactful Applications

“…To do this successfully, qualitative researchers need to be competent and confident in the use of the chosen non-textual media, be responsive to the needs of the research participants, and be prepared to be flexible in their approach (85). Hence qualitative researchers must allow those taking part to express their views, to the extent of molding the study according to their preferences and interests.…”