Category: Analysis

Last tutorial & term reflection

My last tutorial was as enriching as ever. Discussing my project in a fruitful manner made me realise how much I’d learned along the way. Not only had I gone off my comfort zone but I had overcome many small obstacles across the way, swimming deeper into a sea of uncertainty that I had now learned to embrace.

Starting this research journey, I had lots of big ideas in my mind – but the practicalities of such were slightly off. They were big but were they authentic? Were they trying to be solutions instead of means of research? I realised I had started with big ideas because like many, we’d identified problems and like the entitled students we kind of are, we believe we have the solutions right away.

It has never been more clear that to learn what would suit for a or b scenario/problem, it is important to test those ideas, tweak them, actually engage with those which ideas are intended for. I am proud that I am not doing what I initially had come up with because otherwise it would mean I stayed so safely in my comfort zone I had forgotten the whole point of doing this masters.

Exploring my skills, my interests, my directions throughout research, testing and engagement helped me understand that not everything is the initial layer we first encounter. It takes time to analyse, observe, reflect, engage. I have learned to inform myself from different sources, most importantly from real literature, journals, published papers, google scholar and books have been a great help. I have found incredible facts, and research interventions that have inspired me to realise my own journey – or at least, understand it better.

I no longer believe that when there’s a problem, or a gap identified, the key is to come up with an answer or solution right away and stay stubbornly with it; but instead, I believe in the importance of exploring it, understanding it, testing thoughts, engaging with what the audience might need and so on. I know there is always fear of failure, I certainly felt fearful of sharing or asking for stories from such a delicate topic – but I remember the importance of transparency and ethical research – and I was upfront from the very beginning allowing people to understand my reasons for asking and creating.

Somehow my project became about writing, about narratives, about people and about cancer caregiving. A year ago I would’ve never imagined I’d be doing a project about this and so taking the courage to explore it and through interventions, analyse the way of doing it feels like a sign of growth. Interventions aren’t solutions but instead bridges to understanding a little better.

I am beyond grateful for my tutor, for guiding me and pushing me throughout my research. Helping me understand how important it is to stay authentic and to trust my north start. Authenticity, autobiography and authorship are the elements involved in my research – and using this as base for further interventions I know I will eventually have a formed project I’ll be proud of and know it will be useful for my stakeholders.

I have definitely grown throughout this term, things have clicked. I’m ready to put all this knowledge to practise for the next term.

Book Publishing with Richard Reynolds

I had the opportunity to ask questions about the publishing industry and present the theme of my research to Richard Reynolds, our course leader with loads of background experience in the publishing industry. He had worked as an editor and the co-founder of his own book publishing company.

Some of the recommendations and guidance provided by Richard include:

  1. Using social media as a way to test my content as well as grow a following; sometimes, having a strong following proves there is an audience for that kind of content and therefore, it gives a bit more credibility to the unknown author.
  2. Prepare a Book Plan, including excerpts of the book, summary of it, the research, audience. Before sending off to publishers it’s important to look into what companies might be interested in reading this.
  3. Research books with similar topics, check out their publisher – then find out whether they’re open for submissions – get in touch over email – my own personal brand matters. It’s important I come across someone who knows why they want to present the book and why I am the person to share the stories I am choosing to tell.
  4. Understand my audience, gather data, share excerpts, consider what to change edit and how I want to tell the story
  5. Finally, if thinking about self-publishing, it’s important to have a carefully laid out plan, time investment will be key. Find accessible platforms and most importantly, plan a promotion plan.

Overall, it was extremely useful to chat to Richard. He gave me some pointers that I hadn’t thought of and made me understand the possibilities through different examples of people he had worked with. The next step is to look into similar theme books and check out their publishers, get in touch with the publishers as an opportunity to create this meetings as interventions. Moreover, to keep writing, get serious, collect stories, knowledge and find the most suitable way of delivering quality content for an audience that needs it.

New writing: That shitty google search I regret doing

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As part of my next steps, I mentioned I would update a new chapter of my story – collect thoughts and responses and then continue with my analysis.

Extract from my writing:

When I did all those google searches, I truly was trying to stay optimistic, it wasn’t a self-torture method in which I was aware that percentage was going to come up. I guess maybe I was trying to find an explanation to how it all just came to happen and what is meant to happen next. After all, one day you notice your loved one is unwell, the next you’re told it’s a tumour, the next it’s malign, the next it’s got a name, the next you are expected to accept this is reality and is here to stay. 

Just like that. No guide, no manual, no explanatory video of what to do next. 

Everything had changed the minute I heard my mum’s unwellness was cancer, but doing that search served as a confirmation of that reality. It’s like, I had been trying to process what I had been told, trying to perhaps lessen the effect of it by telling myself “it can’t be that bad, it’s my mum, she’s healthy, she’s always been healthy” or “hopefully, there is a cure, more options… like with other cancers”. 

Feedback, responses:

Today, 23rd of August 2021, I posted one of my writings, an extract from a chapter I am yet to finish – but I wanted to involve comments of other carers who, like me, might understand the anxiety of searching up a loved one’s diagnosis online. What thoughts do they have on what I’ve said? Can they even relate? What advice is there to give? And so to my surprise, there have been some responses and most, I’ll be including in the continuation of the writing.

Disclaimer. Warnings. Making people aware. Hope. (key words from comments)

Some of the observation here so far are very interesting – there’s definitely relatability as well as searching for answers and finally, holding to hope and optimism. I love to see it. I will include this, with permission, as part of the continuation of my next reflection – even against the numbers, the percentage can still be your loved one – no battle has been lost.

What’s next

  • My goal is to write another chapter (and with this, create another intervention)
  • Start including the stories of the 15 people that have so far shared with me. Through anecdotes and journeys that weirdly collide together.
  • Include the selected illustrator on board (I had 5 apply for the project, but I’m thinking of only having one style throughout the book)
  • Write a book proposal and send it off to publishers for feedback.
  • Gather comments on the importance of getting support from the Cholangiocarcinoma foundation, Cholangiocarcinoma charity UK
  • Translate the book to Spanish and publish also for a Spanish speaking audience, analyse their feedback.

Where am I right now?

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.

Hope Edelman’s trajectory and the importance of self-narrative in link to my project

Hope insisted we stayed on to discuss not just the talk but our own personal feelings – I took this opportunity to express my thoughts about narrative and my own project. Unfortunately, this wasn’t recorded for ethical and privacy reasons and Hope mentioned that, if the time is found, she’d be able to send me written feedback about the project. I have send her an email with it as well.

Anyway, I expressed my project: I have caregivers on one side, patients and two objectives: awareness and/or support.

She used her own example, as a New York Times best-seller of the book Motherless Daughters, that highlights her own story with grief, after her mother passed away from cancer when she was 17.

She explained that during her university studies, she too had been given an assignment to develop a portrait project on someone or something and she had decided to do it on Bruce Springsteen and music of her generation. She said it was something that resonated with many and that was relevant to the time. However, what she noticed was that she would spend most of her time actually writing about a boyfriend she had the year after her mum died (also the year of a lot of Bruce Springsteen). What she noticed was that she had been with him because he was also going through grief during that period, and in a way – they’d found comfort in each other without necessarily talking about grief.

She had found herself writing about grief without knowing – and when she presented her essay project to the class, her teacher pointed out the project wasn’t about bruce and his music but instead, about grief and support.

She then used this base to start writing a book proposal and went on to collect 24 stories from different women going through the same grief of loosing a mother. What she realised is that some stories carried similar elements and others complete different ways, but what she thought was most wonderful was the idea that they found comfort in speaking to someone else who understands.

The idea of feeling alone during one of the hardest times of your life was something that Hope had mentioned was very relevant to her own story; and that when she created a book story she had initially intentioned it to be just about the other women’s stories and not her own. However, her teachers suggested that it was her story the conducting one and that to leave it out would be again, like the Bruce Springsteen case.

She agreed and drafted her proposal, this got her an agent and publishers interests – this served as a prompt to write the full book quite early on in her life after that project, and when published she mentions being contacted by so many women across the world, through letters, letting her know how much comfort and relatability and support her book brought to them. She mentions the book as her own intervention, along with the essay and the proposal.

n terms of feedback, I got to briefly explain my situation along with the idea of the book and the complex thought between building awareness or creating support and she expressed that by creating support I’d be ultimately building awareness. She also told me include my story as the conducting one, as proven with my research, people often need that push to open themselves up in the first place. Finally, she suggested once I have a first draft to send it over.

What I have learned from Hope’s trajectory

Much of Hope’s journey resonated with mine. Caught up doing a masters where I cannot back down from because of a scholarship and therefore, having to do it while being a caregiver has been complicated. And much of my headspace does not process focusing on other information that isn’t what my reality currently is. I have gone in cycles trying to understand what is it that I want to achieve? Who am I trying to help? What am I focusing on? Because I’ve gone through so many unexpected changes in a matter of six months that things can be a bit of a rollercoaster.

I find myself in most of my free time understanding how to deal with complex emotions, the other time I spend speaking to people who are going through the same and the other, reading up on heavy data hoping to find some optimistic journal to hold on to and finally, most of the time I’m supporting my mum with fear and love.

My writing was clear: it resonated with many people currently going through the same, being the main supporters of a loved living with a life-threatening disease

However, there are little books about the caregiver’s cancer journey; how to support oneself, the other and how to keep your life going as well. The only available ones are few that discuss a lot of the technicalities but perhaps, little about the complexities of thought and heart.

The brief but intense and practical discussion with Hope helped me understand where my project could head, who it could support and how I could make it happen. This in itself, has served as a way to understand and validate the relevance of narrative as a tool of support. And to start feeling less guilty about not focusing on a theme which is not linked to my personal circumstances.

Carers and The Law: In conversation with Sebastian Montague

Carers & the law, a conversation with law/BAR student, Sebastian Montague

As part of my research in the subject of carers, I decided to interview Sebastian Montague, a law student with experience in welfare, immigration and benefits law to discuss the topic of carers and legislature.

Here are some of the questions discussed throughout the interview:

  1. What do you understand as carers? 
  2. Do you think carers are treated fairly by the government? What I mean by this is, do you think they have access to enough support or benefits? Carer’s allowance, care package, benefits*
  3. Would you say that, to some degree, they are invisible? 
  4. Can you give me an example in which you have been involved in a case on the carers side? 
  5. What do you think are some of the challenges carers might face today? 
  6. What are some of the solutions that you think are needed or could be introduced to improve such situations? 
  7. How do you think covid-19 has magnified some of the carer’s key problems?* 
  8. Why do you think it’s important to hear carer’s stories? 
  9. Finally, my project involves reporting their own stories along with photographs of different carers, from young to old, to showcase the diversity and highlight the importance of their work – do you think this project is of relevance? In other ways, do you think highlighting the work that these people do is necessary? 

Observation:

During the conversation some very interesting comments stood out, for example: the idea that caring should*, to some degree, be recognised or seen as a job even if considered legally unpaid – it’s still time-consuming for someone who’s working over 35 hours a week looking after someone; in any other work-related scenario that would be a full-time job – so why is it that in a socio-familial setting it is expected to be treated as if it’s not? To what extend does that feed into the social stigma, guilt and embarrassment that some carers feel with the label of what they do?

Furthermore, it came up that one of the biggest stresses is the allowance that the carers get; and how such is directly linked to the person they are caring for. So as an example, if the person they are caring for has a disability allowance this means the carer is elegible for carers allowance however, if the person they would be caring for is not getting benefits then the carer may not be able to apply for carers allowance. It could be argued that the carer is seen, in the eyes of the government, as an extension of the person they are taking care of and not so much as their own person.

Further research will be done in this observation exploring the terms of quality of life, welfare state and what it means to be a person. And the role of identity in full-time care.

Key words identified as solutions during the conversation about carers were: awareness, social stigma, financial hardship, social exclusion, culture

People that I have gotten in touch with to explore the topic further:

Eurocarers: Contact

Homepage
  • Carers UK
  • Interview or have a call with Robin Allen (new rights to 2.5 million people in Britain who combine paid work with the responsibilities of caring)
  • LUÍS MIGUEL POIARES PESSOA MADURO (Ex-general advocate in European Court)landmark ruling in the European court, discrimation against a woman who was a carer for her deaf child.
  • Health and Social Care Secretary Sajid Javid

The Act of Care

Being a carer has always been an existing role, in different tribes at different times. At times, people have been carers without even knowing so. While being a carer is no easy task, it is often something we can undertake love and little experience as our motivations come from a good place at heart. However, there is a difference between occasional care that does not alter an individual’s lifestyle  and long-term, heavy-duty care in which the individual providing the care must make some sacrifices in order to have available time for several time-consuming tasks. 

Again, caring and sacrifice feel like opposing words, as if caring was a drain, or it made one give up other things – such can signify a sense of guiltiness from the individual’s perspective as of course, collectively, we understand, caring comes from love, community and sometimes, as a natural cycle of life responsibility. 

So why is the study of care such a complex topic? Well, it is because of a wobbly ground involving multiple mixed emotions, often conflicting ones. It’s not only wellbeing the main focus but the legal side of the subject matter, and also, the human rights that come with it – finally, to equate fairness in all citizens (in whatever scale that is achievable), it is important to first recognise the act of caring, mostly an unpaid task, as an alteration of an individual’s lifestyle and therefore, we must have a closer look at the individual’s quality of life landscape. 

For instance, if the individual’s mother is sick, they have to give up their job abroad to move home and look after her, what consequences will come with that? Will the individual feel isolated? Will the individual give up exciting job prospects or will they be offered the flexibility of remote working in the time being? Will the individual get some financial support? Is the individual remotely qualified to be able to look after their sick mum and if not, how can they become a bit prepared to face such a journey? There are many alterations to the individual’s life all at once, and while the individual’s motive is wholesome, we must still acknowledge that it is affecting the individual’s life, regardless of their sense of duty. 

Further thoughts in the study of caring involve the lack of recognition and praise these individual’s get, and again, while the motivations come from personal responsibilities and familial sense of priority, it is important to highlight the relevance of these unseen heroes’ work. And find ways in which we can celebrate the existence of these people, who undertake such roles that bring such alterations to their life, whether they choose to do this out of choice or not.

Being in a cancer group for a week – observation

After much research done I’ve come to understand different aspects of the pain of being a patient who’s scared and uncertain about their future. Not just that about also a patient dealing with change, a withdrawal of a life they knew and the hard process of trying to accept their new reality.

Through being in a Facebook group for cancer patients and their caregivers I have been able to read their stories, sufferings, thoughts, what helps them and what doesn’t. I have seen a mix of hopefulness and hopelessness.

Some observations:

Most people seem to prefer tv shows more than watching movies for distraction. This is due to the length of what they’re watching and the effects of “the chemo brain”. Episodes are shorter and it helps with the shorter attention Spans and memory due to treatments.

Most people seem to find journaling and sharing their own story very helpful. They seem to seek comfort in others thoughts, empathy and prayers. In one of the Facebook groups I am in there are 41.2K members, in another 2k. This is a sign that patients and family members want and need community support through stories during such hard times. Most posts repeat the following words: fear, anger, anxiety, gratefulness, unfairness and change.

Breakdown of interventions:

  • Card deck with prompting questions to get to be able to discuss and open up with family members, caregivers, create a stronger connection through a hardship.
  • SunnySide* Film/hospital touring festival & platform; a platform of feel-good curated short films (no longer than 30 minutes) by fresh talent across the UK*/Spain (to decide). Ideally, they’d be screened in hospitals, either in the rooms for those who cannot go anywhere or as an event when possible. Otherwise, the option of making it solely a platform with whom patients in hospitals can access to with a password; there, they could have an option to journal based on the shorts they’ve seen. This would be curated by the help of psychologists.
  • A non-profit filmmaking organisation focusing on producing short stories written by cancer patients with the hope of offering a way to express themselves and seeing their own creation come alive with the help of young and socially conscious filmmakers and volunteers.* (partnering up with film schools, colleges, acting courses, hospitals); turning short stories into realities. (the money raised from screenings would go into cancer research)* (funding is important – how do we select the stories?) stakeholders: cancer patients, hospitals, family members
  • Inspirational platform of talks from cancer patients for cancer patients

I argue that a creative outlet that involves storytelling, communication and awareness could make an impact in cancer patient’s mental health. Whether that is by introducing a new project to be part of, seeing or achieving something they had not thought about before, unlocking their creative side, or by prompting them to communicate with their circle. Therefore, finding an intervention that can combine those elements and can remain an offline-online option to maintain inclusivity and broaden opportunities is essential.

The evolution of my question after a week multiple cancer Facebook groups:

[initial] How can creative entertainment improve the quality of life of hospitalised patients?

How to improve the effects of cancer treatment on mental health through creativity? 

How can creative entertainment support the mental health of oncologic patients? 

How can creativity improve the mental health of patients with cancer? 

[Current] How can storytelling support the mental health of cancer patients? 

key words: community, mental health, stories