By Katrina Messiha and Nicole Thomas
Nicole
The beauty of the ComPHAD project is that it is starting from a place where assumptions are set aside, and we're learning as we go. It’s liberating. It’s a project that doesn’t assume to have all the answers from the outset, and this openness is what allows our innovative approach to our project and has undoubtedly played a part in building trust with the communities I have had the privilege of engaging with so far.
There is definitely an element of navigating uncharted waters, especially in understanding the experiences of individuals, who face greater challenges and barriers in society, in such a broad term as ‘brain health’. Having seen the value Critical Realism brought to my PhD, I am again using it as a guiding framework to allow me to view every shared experience and story with the depth and respect they deserve. Critical Realism and Realism can sometimes be viewed as the same. Although they have some agreement, Critical Realism places greater emphasis on understanding the layers and complexities of society and culture – humans are social creatures afterall. It allows for more reflexivity and is critical of the process of knowledge production, especially in social sciences.This, therefore, gives me permission to reflect on my own experiences and how they might inform our understanding of the diverse realities we are hearing about – there is no escaping that I am a human and will undoubtedly play a part in the knowledge I am producing. This can be a somewhat uncomfortable process for researchers as we are taught to remain as objective as possible. However, my lived experiences play a part in how I view the world and interact with others within it. It seems at odds for me to not have a place for it and this is what Critical Realism allows.
In this vein, the intricate task of interpretation has emerged as a poignant theme in our work so far. It is a theme resonating deeply with the communities we interact with. Individuals share how interpretation permeates through many areas of their lives: interpreting public health messages, written health guidance, the intricacies of the healthcare system, especially for those who were not born here, and extending to other systems like housing, welfare, and law. For cultures that value privacy, the challenge of interpretation from one language to another is a complex dance of nuance and understanding, which is further complicated by the stigma surrounding mental health.
As I’m working to identify the foundational building blocks of our project, I find this theme of interpretation interwoven with the actual methods I am employing to gain insights and the methodology I’m endeavouring to develop. It becomes even more pronounced when I insert myself reflexively into the mix. Katrina and I face our own set of interpretation challenges - how to translate the constructs of Critical Realism into a co-development approach with fidelity. We’ve taken a great deal of time and thought into how to interpret the conversations in such a way as to get back to our analytical roots and be able to theorise systematically what we are hearing. It's a conscious effort to bridge the gap between the complexity of lived experiences and the clarity needed for academic rigour.
However, knowing how easily things can get lost in translation, the challenge to interpret Critical Realist constructs into simple co-creative questions was daunting. I certainly found I needed to step away to clear my head a number of times, as with analysis often come paralysis. But it’s also at the heart of what we want to achieve in this project. It’s the act of interpreting, reinterpreting, and deeply understanding that is the essence of ComPHAD. You might be wondering, 'why reinvent the wheel?' with a complicated approach, especially with all the existing ways to co-develop out there. Well, there's a method to our madness, and a rationale for our process - and for the next part of this story, I’ll hand you over to Katrina, who's been instrumental in shaping this approach.
Katrina
As I reflect on my ongoing PhD journey so far, I've come to appreciate the impact of systematically identifying that there is a limited presence of explicit theories underpinning co-approaches in contemporary public health research. This realisation has further strengthened my commitment to adopting a critical perspective when implementing co-development methodologies.
Moreover, as I further scrutinised the extensive co-creation academic and grey literature, I encountered a host of challenges that contribute to the complexity of understanding co-creation. I recall an early attempt to write a scientific manuscript drawing from co-creation literature, beginning with the sentence, 'co-creation is riddled with benefits'. A co-author found it amusing, and it was upon revisiting that sentence that I reflected on the true nature of co-creation – indeed, a riddle.
The issue of naïve praxis within co-creation emerged as a key concern - what constitutes the proper use of theory and methods for co-creation? Notably, co-creation itself is a fragmented terminology, with questions arising from academics about whether it's an approach or a method. In various academic fields employing co-creation, the risk of fragmentation and concept stretching increases as researchers often work in isolation within their own field.
Tokenism is a concept we've all encountered, but is using consultation interchangeably with co-creation the only way it results in tokenism? What about defining and measuring meaningful engagement?
In fact, in the first blog produced for my Project Health CASCADE, myself and a colleague (Ms Chrifou) explored the notion of ‘True’ Co-creation Versus ‘False’ Co-creation, and through some interviews with experts in the field, we were able to infer the controversial and philosophical arguments for co-creation.
In many respects, co-creation's place in public health research seems to be either exaggerated or underestimated. It could be argued that its place lacks a consistent, balanced perspective. Co-creation, as I've come to understand, isn't a panacea, but it does allude a magical appeal – such as more empowerment. After all, why wouldn't we include and engage with the very populations directly involved in the outcome of our research or practice?
Imagine a 'meta-theory', often referred to as a 'theory of theory', capable of reshaping our comprehension of empirical research within the co-creation context. This meta-theory could address common challenges in co-creation, such as tokenism, by setting clear boundaries for our knowledge while encouraging pluralism and collective intelligence, including the fostering of a deep exploration of phenomena by multiple investigators. It would align with how we understand the nature of reality and the principles around what counts as knowledge within our collaborative research efforts. It could also serve as a balanced lens in reconciling two extreme ideas of reality: objectivism and subjectivism whilst being inclusive of all potential causes behind a phenomenon. Imagine no more, it’s called Critical Realism. The question then arises: how do we use such a meta-theory?
The brief answer is that for a comprehensive understanding of the application of Critical Realism methodological principles in the context of empirical research, I invite you to await the release of one of my upcoming PhD scientific articles. Nevertheless, if you're interested in how we employed Critical Realism to structure and comprehend data arising from a day-long participatory workshop aligned with Patient and Public Involvement and Engagement, please continue reading.
Along the trajectory of the ComPHAD project, Nicole and I were focused on understanding the lived experiences and perspectives of populations facing complex and chaotic lives (a term used by some of the individuals) and brain health challenges, through the lens of Critical Realism. We contemplated the following critical questions with these populations, which we put into lay terms whilst retaining theoretical salience:
- Based on what you've seen and know, what might prevent and help some (aging) individuals who have complex lives from accessing healthcare services or engage with research?
- What does brain health mean to you and where did you get your ideas from?
- How do individuals with complex lives know about available opportunities for healthcare services (access) or research engagement? Where/ to whom might individuals with complex lives usually go for (trusted) help and advice?
- Can you imagine how social factors affect people with complex lives in terms of their decisions (positively and negatively) about healthcare services and research? For example, friends, family, healthcare professionals including GPs, the public at large?
- From your perspective, how might the environment (physical and social/ cultural) influence individuals' decisions to access healthcare services or participate in research?
- What factors do you believe influence people's choices to either seek healthcare services or participate in research, given their unique situations?
- In mind of all the people and things that influence you, how do you (or not) take control and ownership of your health decisions whether related to access to services or engagement in research?
These questions framed using the Critical Realism lens played a clear role in unearthing the important nuances of the brain health phenomena to a compelling extent. Through our reflection on these questions alongside those who participated in co-creating our knowledge base, we came to the realisation: the host of challenges that contribute to the complexity of understanding co-creation are intimately connected to 'the real', as illuminated by critical realism. In this way, Critical Realism emphasises embracing alternative perspectives on real-world issues and acknowledging our human limitations to attaining knowledge yet promoting a mindset of understanding and empathy despite these limitations. I would like to end on the note that, ironically, by collaborating with others through so-called co-creation, we can seek to move a step closer to empirically understanding our world.
