The results of this intervention will allow me to observe points of improvement, the correctness of the approach (idea) and finally, whether there’s a possibility of this project carrying forward. The intervention serves as a mini in depth review of the response towards the project and to evaluate whether it would serve any purpose.
Based on this intervention the following is an analysis and observation of the response towards it. Here I’ll analyze the following points that I’d stated as part of the audience and objectives.
It’s important to keep in mind that most of the responses are from people from different nationalities and not limited to one geographical location. This has been done on purpose in order to show or test universality in narrative, rare cancer understanding and feelinghood. Though its a small sample, it still shows a positive outcome for empathy, awareness and accessibility. The common language used was English, translating it to other languages is an important goal so that the narratives are the last thing to get lost in translation.
Further steps:
After analysing this intervention, I am yet to identify whether multiple self-narratives is the correct way, such written in first person or if I should tell the account of the stories from my own personal journey interlinking with all the different journeys I have been learning about. Still maintaining its collectivity but having more control of the tone, engagement and voice.
Once I have decided the angle for the journey to be approached, I will bring an illustrator on board. I will contact Cholangiocarcinoma Foundation for feedback of a draft as well as a foreword.
Alongside this, I have contacted a psychologist to help me edit the structure of the book to make sure it remains comforting as well as informative and accessible.
Further observation lay in my own process. I personally struggled to contact people who are related to cholangiocarcinoma because I felt scared of the language I should use and the ethical considerations involved. I made sure in every step to ask for permission, to allow for sharing to be their choice and I also made sure to explain that this is a master’s project with the intention to be taken further to raise awareness.
I thought it would be ethical of me to initiate this qualitative research sharing my own story, allowing myself to be vulnerable as a way to allow other people going through the same journey to understand my motives for my project.
Other struggles are the blockage of when some people are not willing to share their story, along with the fear of the intervention being rejected or poorly interacted with as it comes from a good and well-researched place at heart. However, it was heart-warming to see such a positive response and those who did not feel like sharing their own journey or words were constructive, kind and open to explaining why they didn’t feel ready yet.
Overall, I have always known about the power of storytelling but it has been extremely useful to run this intervention and truly test whether its self-narrative that holds such moving power. It has started wonderful conversations with people related to CC and those completely unrelated. It has shown, even at a small scale level, that behaviour can change if we involve personal narrative (with a modern twist) into the picture.
I am hopeful that this could serve as a base for further research, not only for investment in rare cancers research but also in the mental health and accessible support of those who are direct carers to patients with such diseases. Moreover, I hope that taking this further helps many people who are about to start this journey with their loved one to feel less alone.
Proof: