I am now in a space of mind where my topics of research feel way more clear than before I started this journal. As you might see, I’ve changed angles throughout my time researching but not drastically nor without purpose, instead – use this as proof of deep research and interaction.
One finding leads to another, and so on – this cycle leads to clarifying certain aspects of the journey, taking others away and realising what’s tangible and applicable – as the course states.
Process:
Calculated strategies and risks, narrowing down & understanding the angles
I started the journey believing I wanted to explore healthcare, wellbeing and creativity in some way. I first wanted to incorporate entertainment programmes within hospital (still a valid idea but not one I wish to pursue during times of a pandemic; not just because of it’s legal limitations but because I do not wish to put anyone in harm; I also no longer want to work as the producer, overseeing other’s creativity but instead become the creator or one of the creators).
Continuously, I thought I’d advocate to improve cancer patient’s wellbeing through film screenings or through photography. However, my intervention planned had received approval (I had a person with cancer and her caregiver willing to do the photoshoot – and certainly, excited about it) – however, covid cases in Catalonia started to rise during the time and they decided to cancel the shoot because of safety. As an ethical photographer, only having one vaccine (rhythm of vaccines in Catalonia has been slower) and understanding the risk, I decided to stop pursuing this until I had my two doses and cases in Catalonia became stable again.
Next, I focused on caregiving, and focus on doing a story-book of caregivers stories through photography to highlight their work. There have been multiple campaigns highlighting the labour of unpaid caregivers and also, after my tutorial- I realised that if I were to do this somewhere, it would have to be in Spain to be able to take the photos. Approaching stories in a very generalised way felt impersonal and I thought I’d much rather have a specific focus to start with.
Here is when I joined a caregiving Facebook group in relation to cancer; which helped narrowing the focus. What I observed was that people felt comfort in sharing each other’s stories though most involved a lot of clinical wordings and asking for advice, a lot of hard stories to read about loss but little about the process or the journey. I had read those complex feelings on comments but not as much on posts.
Within the cancer group, I read relatability comments based on the cancer type. For example, people that would post their father’s battle with lung cancer would get comments expressing their own father’s/mother’s/husband’s/wife’s journey with lung cancer as well.
I myself seemed to relate too – as it’s much different the feelings that comes with a type of cancer that inoperable, or at Stage I than an inoperable stage IV.
Therefore my observation was: caregivers need support, they like to express themselves, most tend to open up more when others take the first step, many look for comfort, many feel alone – many feel scared, most relate based on stage/type of cancer though of course, there’s universality in the fear of a cancer diagnosis without detail.
I then looked up for a support group of the cancer type my family has been involved with because of my mum. As I joined it I realised the following: I, too, felt less alone by being with people who could directly relate. Rare cancers are very much frustrating, there’s less information about it, and the emotional health involved in accepting the diagnosis/prognosis is more complex.
Here, I decided to focus on sample study and focus on caregivers of rare cancer types; but in my research, to be specific, of cholangiocarcinoma/bile duct cancer caregivers.
So my intervention was to write my story in a narrative way, involving techniques of storytelling including engagement and beginning, middle and end. Shared it in book format, almost like an opening chapter or essay – and ask for feedback.
You will be able to read my evaluation of my intervention on another page of my blog.
As you see, my process has been expense and with some obstacles, but it has led me to a clearer path. I still am touching subjects of healthcare, wellbeing and creativity but through an accessible, needed and transferrable form.