Franco is a senior researcher with a background in nursing, childhood and ethics. He has a long history of working with communities and youth as a researcher but also in his position as a head nurse of a pediatric intensive care unit. His main research interest is about ethics and childhood. He leads a large international project known as VOICE (Views On Interdisciplinary Childhood Ethics - https://mcgill.ca/voice/). Franco and his team, which involve researchers and youth and family partners, are studying how some of the principles of engagement and partnership that are used in working with adults might apply to engagement with children, and what changes are needed to develop better approaches for children and youth. Franco has learned over the years that researchers often make assumptions about the needs and interests of individuals and/or community, resulting in engagement efforts that are not meaningful for those involved. He also thinks that it is important to be clear about how the outcomes of engagement will be applied within the community and the larger impact this may have in other areas of the community. Franco continues to learn about what people need in research partnerships and continually seeks feedback from participants.
And so, it’s in consultation with community leaders every year where we have had a longstanding model of partnership. I don’t think I would use the term ‘patient engagement’ because we don’t use the term ‘patient’ there. This is really a community health model and so, it’s really community engagement and community partnerships and conducting research. Then in working with nurses and other professionals in the community in looking at how to use the research to inform practice changes.
Children and youth, that’s where I work. Through the work that we’ve been doing, we have come to a realization that the frameworks that people generally use in relation to children and youth justify children and youth’s exclusion. Because most people are operating on very outdated models of child development, whereby children’s differences from adults are generally interpreted as deficiencies. So, the children may think differently, may have different priorities is generally interpreted through a lens of immaturity on behalf of the adults that are structuring services for them. Generally, it’s been my experience through some of the children and youth working in our research, have made it very clear. They can see that they’re being spoken to and treated as immature and incapable and they don’t know what’s right or good for them. We realize that maybe some of our premises and some of the theories, some of the models that we use about how we imagine and understand what it is like to be a child who has cancer, what it is like to be a child in palliative care, what it is like to be a child in a psychiatric centre. We assume that what we’re doing is benevolent and caregiving, but theare are dimensions to what we’re doing that might be very oppressive, humiliating, scary and that we perpetuate because we presume that they’re ignorant.
Yes, there are different models. If it’s an episodic consultation, normally what we do is we ask…we negotiate it up front. What’s a reasonable amount, considering this amount of activity, and in what form? Money? Gift cards? What is the right way to do it? There are a few models on that. We tend to use gift cards, just because there are some people who get concerned about how money gets used, but I’m not sure that that’s respectful either. I suppose that that will… but I think some adults are getting gift cards too, right, there’s a tendency towards… it just seems like a bit more thoughtful than just saying “Here’s $25 for spending an hour with me.” Rather “Here’s a Tim Hortons gift card,” or something like that. Then there’s all that too, right, what kind of gift, but usually these groups are good advisors on those kinds of things. I think the hard part is when you start. So, these are… like places [institution] and all that, they have experience with it and they will tell you what it costs to get their engagement.