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:
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.
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.
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.
Understand my audience, gather data, share excerpts, consider what to change edit and how I want to tell the story
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.
Some current books available somehow related to this:
The selfish pig’s guide to caring by Hugh Marigott
Okay, so this book seems really interesting because it has an informal, direct, and open way of not just communicating the writer’s journey of being unprepared for caring but also touching on subjects that are relatable and applicable to many who might find themselves in the same boat. It has a nonchalant air to the writing but I like its clarity in what the book is NOT about. Stating he’s not a medical practitioner nor psychologist nor it’s a how to care, but instead lessons, learnings and reflections that hopefully resonate. The book has got 247 ratings, most of 4.5 stars on Amazon and some of the comments include:
“This self-help manual is a delightful change of pace for the caregiver. With humor & practicality, Mr. Marriott provides understanding & support for anyone who’s dealing with the frustrations & stress of being a primary carer for an ill loved one.”
“Common sense different book for the 24/7 care-giver. This is a must. He writes and has a bit of humor woven into the very helpful chapters. It is not like other books which dwell on the legalities. He tells what to expect, what you may feel, and options for dealing with the issues and stress…all in a caring way. He lived it himself so he knows what it is like”
“This book was written from the caregiver’s point of view and I really liked that a lot. There is almost nothing out there that speaks to the person doing this lonely job. “
“This book helped me realize I was not alone. I would recommend it to anyone who cares for anyone especially a spouse. “
“First time in a few month of my caring life I was able to laugh at myself and put things in perspective. My piglet (Person I Give Endless Love and Therapy) is sleeping 🙂 I got stronger. “
Things I Wish I’d Known: Cancer Caregivers Speak Out
by Deborah J. Cornwall
Family caregivers are the unsung heroes of the life-saving drama that’s triggered by a cancer diagnosis. Nearly three quarters of American households will find themselves caring for a cancer patient at one point in their lives. This book is the first to capture their thoughts, feelings, and insights on a large scale. It is based on 101 formal interviews with non-professional caregivers (some of whom are cancer survivors themselves), covering 122 patients in 19 states and Canada.
This book also has 4.5 stars, on Amazon including comments like:
“Wasn’t what I was looking for. I needed support advice. My Sister had stage 4 pancreatic cancer and she was extremely angry. I needed help understanding the stages and how to help support her. As well as help me not get upset with her for yelling.”
“Deborah J. Cornwall eases the guilt of the compassionate caregiver who may have begun to resent their role even as their concer-stricken loved one struggles with life and death. In “Things I Wish I’d Known: Cancer Caregivers Speak Out, the stories of those who have been there elegantly portray the struggles of those powerless in the face of watching a loved one so ill”
“Deborah J. Cornwall eases the guilt of the compassionate caregiver who may have begun to resent their role even as their concer-stricken loved one struggles with life and death. In “Things I Wish I’d Known: Cancer Caregivers Speak Out, the stories of those who have been there elegantly portray the struggles of those powerless in the face of watching a loved one so ill”
Observation:
Based on the research of books available these two seem to be the most relevant in the act of caring, one centred in cancer cancer and the other one in general unpaid care. I have found both extremely interesting in terms of approaches as they’re varied, I will read both to have a better conclusion on it- however, from the examples and comments they both seem to be books responding to a community who is truly in need of targeted support books.
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.
Today, as part of my research in caregiving of rare cancer types, I will be attending a talk by Caroline Criado Perez. Caroline is the author of the Sunday Times best-selling book ” Invisible Women”.
Please find further description of the book below:
Data is fundamental to the modern world. From economic development, to healthcare, to education and public policy, we rely on numbers to allocate resources and make crucial decisions. But because so much data fails to take into account gender, because it treats men as the default and women as atypical, bias and discrimination are baked into our systems. And women pay tremendous costs for this bias, in time, money, and often with their lives.
Celebrated feminist advocate Caroline Criado Perez investigates the shocking root cause of gender inequality and research in Invisible Women, diving into women’s lives at home, the workplace, the public square, the doctor’s office, and more. Built on hundreds of studies in the US, the UK, and around the world, and written with energy, wit, and sparkling intelligence, this is a groundbreaking, unforgettable exposé that will change the way you look at the world.
The importance of this talk
This talk arises from a post that a reader wrote in regards to the book; this act in itself showcased not only the importance of turning heavy data or information into easy-to-read and accessible narrative but also the importance of believing that someone out there, no matter who, might happen to benefit from it.
Therefore, building awareness & prevention.
As a result of sharing this personal narrative (Hope Edelman’s one) other women, who have not read the book, will be more alert about the signs, and might even get the book. Continuously, this led to Caroline scheduling a talk with Hope to discuss further information on data gap in medicine.
This is of relevant to my project
Because it demonstrated the importance of personal-narrative; one story can create a domino effect, affecting multiple lives of others positively if spread right – it helps create awareness and prevention, or support and relatability.
Again, this also shows that, turning “specific” topics such as “data and gender” into a book can happen. It can have an effect. It can contribute to some scale into a bigger problem – and make others relate, realise and take action.
It can reach multiple audiences, interestingly, different stakeholders can benefit from it.
What I have learned:
During the talk with Caroline Criado Perez and Hope Edelman
This discussion was extremely informative because we touched on the topic of gender gap but also, went deeper into the importance of storytelling.
Basically how communicating facts and figures in engaging ways, making the impersonal personal matters to spread a message.
Alongside the discussion, multiple comments on the chat were shared – many by different women expressing their own experience with being misdiagnosed or having a mother or husband who was unfortunately a victim of the data gap in research.
As people shared their personal stories, it was easier for someone with no relation to heart-attacks to relate in one way or another – after all, most of us can “try” to understand what pain would come with losing a loved one; and in this case, many did. Replying back comments of relatability, sending comfort or words such as “I understand”.
—
After the talk with Caroline, 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.
In 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.
Some current books available somehow related to this:
The selfish pig’s guide to caring by Hugh Marigott
Okay, so this book seems really interesting because it has an informal, direct, and open way of not just communicating the writer’s journey of being unprepared for caring but also touching on subjects that are relatable and applicable to many who might find themselves in the same boat. It has a nonchalant air to the writing but I like its clarity in what the book is NOT about. Stating he’s not a medical practitioner nor psychologist nor it’s a how to care, but instead lessons, learnings and reflections that hopefully resonate. The book has got 247 ratings, most of 4.5 stars on Amazon and some of the comments include:
“This self-help manual is a delightful change of pace for the caregiver. With humor & practicality, Mr. Marriott provides understanding & support for anyone who’s dealing with the frustrations & stress of being a primary carer for an ill loved one.”
“Common sense different book for the 24/7 care-giver. This is a must. He writes and has a bit of humor woven into the very helpful chapters. It is not like other books which dwell on the legalities. He tells what to expect, what you may feel, and options for dealing with the issues and stress…all in a caring way. He lived it himself so he knows what it is like”
“This book was written from the caregiver’s point of view and I really liked that a lot. There is almost nothing out there that speaks to the person doing this lonely job. “
“This book helped me realize I was not alone. I would recommend it to anyone who cares for anyone especially a spouse. “
“First time in a few month of my caring life I was able to laugh at myself and put things in perspective. My piglet (Person I Give Endless Love and Therapy) is sleeping 🙂 I got stronger. “
Things I Wish I’d Known: Cancer Caregivers Speak Out
by Deborah J. Cornwall
Family caregivers are the unsung heroes of the life-saving drama that’s triggered by a cancer diagnosis. Nearly three quarters of American households will find themselves caring for a cancer patient at one point in their lives. This book is the first to capture their thoughts, feelings, and insights on a large scale. It is based on 101 formal interviews with non-professional caregivers (some of whom are cancer survivors themselves), covering 122 patients in 19 states and Canada.
This book also has 4.5 stars, on Amazon including comments like:
“Wasn’t what I was looking for. I needed support advice. My Sister had stage 4 pancreatic cancer and she was extremely angry. I needed help understanding the stages and how to help support her. As well as help me not get upset with her for yelling.”
“Deborah J. Cornwall eases the guilt of the compassionate caregiver who may have begun to resent their role even as their concer-stricken loved one struggles with life and death. In “Things I Wish I’d Known: Cancer Caregivers Speak Out, the stories of those who have been there elegantly portray the struggles of those powerless in the face of watching a loved one so ill”
Conclusion:
My whole life I have been keen to help others, to advocate towards important subjects and most importantly, have been a firm believer in self-expression and compassion. Life has thrown a very uncertain situation my way, and in the way of many other daughters currently affected by this journey. I have come to understand, throughout this process of intervention, research and reflection where I’m headed.
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:
What do you understand as carers?
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*
Would you say that, to some degree, they are invisible?
Can you give me an example in which you have been involved in a case on the carers side?
What do you think are some of the challenges carers might face today?
What are some of the solutions that you think are needed or could be introduced to improve such situations?
How do you think covid-19 has magnified some of the carer’s key problems?*
Why do you think it’s important to hear carer’s stories?
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:
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.
She is his sexuality. 0:28 his sexuality is his cross to bear, a part of himself that is a burden to be carried never to be embraced. Throughout part 1 he struggles with his sexuality. At the end he rejects her, and he and the piece of himself he has rejected are both dying. Beginning part 2, she approaches him and he is ready to be destroyed by her, but instead discovers that the thing he was sure would destroy him instead lifts him up, and he learns to recognize and embrace the piece of himself. 3:49 He becomes a champion of this cross he was sure would crush him. In the end, although there is great pain in this admittance, he finds salvation in accepting his sexuality.
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.
Here’s the thing. Up until now I had been focusing on cancer patients and mostly because I experience what is like to live with one on a daily basis. I am aware it is though and it’s a hard reality to process, however, the diagnosis did not affect just my mother but also everyone in the household and most especially those who focus on giving her care, my dad and I.
This led me to the conflict of evaluating whether I should be focusing on patients or caregivers or both.
To start with, the doubts emerged in my head a couple of weeks ago, when I joined several Facebook groups of different cancer patients, they would get to vent and share their stories, send each other support links and different platforms where they could access information. One of the groups was only for friends and family members of cancer patients, the conversation there, while different was also quite similar.
Some people felt exhausted, anxious, fearful, guilty and all in secret. Most of those who identified themselves as the carer of the cancer patients highlighted that they had to stay extra strong for the both of them, extra positive, had to try to look after themselves and the patient. Their mental health wasn’t at all great and there was a partial guiltiness to this because “they aren’t the ones diagnosed” and they “aren’t the ones going through it”, only that they actually are going through the journey as well.
I used to always tell my mum when I was little that I’d rather die before her because I’d never ever want to go through the pain of seeing her go. Weirdly, as aware as I am today that it might sound extreme and anti-natural with the cycle of life, I still stand by saying that the thought of losing her is unbearable. And therefore, I’d much rather be the one getting sick than be the one seeing the person I love the most in the world go through it. It’s a very strange messed-up feeling, but thankfully, it seemed like I wasn’t the only one feeling that way. Many people in the group related and would share their own mental health stories about how they have been dealing with this whole change, secretly.
So, through my research on mental health and cancer patients, I did realise one very clear thing, there was a lot. A lot of information, a lot of research done trying to improve, observe and evaluate the factors of poor mental health in some patients and how to support it. However, the literature found for mental health, support in caregivers is a very reduced number. The few papers that do talk about however, do mention the increased levels of anxiety and depression in caregivers due to the responsibility and the emotional conflict they undertake.
And all of these thoughts lead me to my tutorial, yesterday 28th of June of 2021.
So what happened during my tutorial?
I updated my tutor on some of my findings, some of my thoughts and most importantly the direction I was feeling inclined to.
I started by explaining that my question is due to change but was not going to change until I had processed the direction I truly want to take. Also, after I have done a photoshoot with a cancer patient and her caregiver.
After this, I was suggested that I should have someone record or photograph the behind-the-scenes of the photoshoot, especially if my mum will also be present during the shoot, this would not only be used as evidence of my interventions but also as an emotional archive.
Furthermore, I expressed my concerns about my focus, about whether it is caregivers or patients and whether having such a specific narrow point on cancer made things not just more limited but also less interesting – and I say less interesting because there is beauty in the diversity of stories that can be told and found.
Through engaging in a very thought-provoking discussion, David managed me to do that he does best, lead me to answer my own question, quite naturally. And so I did, I then expressed I’d like to focus solemnly on caregivers, their labour and bring spotlight to the different faces and narratives these unseen heroes have to say. Some of the words that were highlighted through conversation where: legacy, historial archive, resource.
Moreover, I had made it clear that two of the creative mediums I wanted to focus on exploring were narrative and photography and they are the one dearest to me but also the mediums I want to be known for as I keep developing professionally. This masters is about taking calculated risks and being authentic to oneself and I am done running away from my interests for the fear of not being good enough at them – I will only be good at them and make them my own practise by being perseverant and believing in my skill and power to tell stories, not just this but it’s a good way to finally put myself out there and do a project for the benefit of others through my own work.
So finally, in short
My intervention will be
A book, containing the narratives of contemporary caregivers along with their photograph
I will measure how, all the different stories and faces that lay behind those in need of care, can be recognised and celebrated as seen heroes that through their kindness and dedication, make a difference in a person’s life day by day
This research focuses on examining ways in which creativity and artistic disciplines can support the mental health of ill patients. We look into turning an artistic discipline into a force for good, a humanistic tool for supporting those who might need it. In this study, I choose to focus on cancer patients and their caregivers as receivers of a creative service as a way to feel better. The aim is to measure whether the levels of hopefulness and self-esteem increase in comparison to before the interventions proposed.
I propose that the engagement with an artistic discipline such as photography, as a service, can have positive effects on the patient’s health if done appropriately and with a carefully developed ethical methodology and risk assessment.
I also observe that up until now, cross-disciplines such as art-therapy in cancer, though still a not fully explored practise within cancer patients and hospitals, have been used as tools for self-exploration and distraction. According to some studies, cancer patients who underwent chemotherapy and then did art-therapy for an hour seemed to have improved levels of anxiety and depression. Here, I takeaway the importance of distraction, engagement and experience as elements to be considered for this study; however, I aim to utilise the experience in a less of a therapeutic paradigm and more as an experience that can boost the patient’s sense of self as well as those around them, forging a stronger connection during such difficult times.
I am interested in exploring inner and outer beauty, human connection, humanisation of the arts beyond trend activism, and exploring alternative ways of creating awareness of this illness.
My role in this project is as a project manager, humanist and creative practitioner. Ideally, I’d like to collaborate with other artists who are willing to participate and turn their art work away from themselves and on to creating a positive impact in a reality that we cannot run away from, cancer.
Why
A life threatening illness such as cancer can change a patient’s life in a second. According to cancer research UK, in females, there were around 77,800 cancer deaths and in males there were around 89,000 cancer deaths in 2018. Based on their data, every four minutes someone in the UK dies from cancer. Furthermore, 1 in 2 people in the UK born after 1960 will be diagnosed with some form of cancer during their lifetime. This is alarming, it also means we cannot escape or turn a blind eye to it. We must create awareness, we must invest in research through all the possible ways, we must find new ways in which cancer is talked about, in which we support others and in which we can learn to support ourselves. I believe new initiatives need to be brought to the table, new cross-disciplinary research must be introduced, this matter because it affects us all in one way or another.
According to a cancer study done by the Mental Health Foundation UK, 49% of people interviewed by the charity said they received no support or advice from health services about managing their mental health through cancer, while 66% said they were not informed at all about potential mental health problems that could arise at the end of treatment.
This is relevant not just for cancer patients but for their families and designated caregivers. There are reports that state levels of depression on family member’s of cancer patients because of the uncertainty, the fear and the process of seeing a loved one go through so much hardship, not to mention the economic stress depending on economic stability and or geographic location.
This is an urgent matter, it’s urgent because it’s present and while there is much support available, there can always be more.
How
At the moment, the application of different interventions will be a way to understand more about how cancer patients can be supported through creative experiences.
Some of the interventions that have been thought through, these can vary but will only be analysed after their application.
Intervention 1: A Photoshoot to Remember / preserving memory
Small step: Photoshoot with eligible and willing cancer patients and their families or loved ones.
Big step: An artist’s non-profit organisation supporting cancer patients and their families through empowering, fun and meaningful photoshoots. The shoots would be in collaboration with stylists and make-up artists depending on the patient’s choice. Photographers, stylists and MUA’s come together to celebrate the lives of the patient’s and the role of their caregiver through a creative experience. The patient receives a copy of the photos along with a printed version of their favorite one.
Ideally, the photos could be taken to an exhibition to appreciate the strength of these patients and loved ones and raise awareness at all the ways in which cancer can be showcased.
Intervention 2: Cards to Open Up
Small step: Curate questions with the help of a qualified psychologist to promote conversation between a cancer patient and their loved ones, facilitating conversation and allowing for the patient to feel listened to and for the loved ones to understand the complexity of the journey.
Big Step: Create a deck of cards with the defined questions and design, ship and bring to cancer charities with the opportunity of them being given as a resource for conversation at home.
What if
What if the interventions actually worked? What if they could make the slightest difference and raise awareness? What if we could take the pictures to an exhibition or museum and showcase the beauty of those struggling to appreciate their journey and fight and celebrate their resilience? What if we could find a way in which creative experiences tailored to specific illnesses could improve their sense of self and their hopefulness levels? What if a road to easier communication could be created with the simplicity of cards? Or what if, through the failure of this interventions and this proposal, we are able to discover new and more accurate ways in which to support patients and caregivers enduring this journey?
The purpose of this study is to explore the potential of creative experiences as a medium to improve the quality of life and hospitalisation.
KEY WORDS : QOL (Quality of Life) – LOS (Length of stay), experiences, creativity, hospitalisation
QUALITY OF LIFE: General quality of life encom- passes all aspects of life, includ- ing health, recreation, culture, rights, values, beliefs, aspirations, and the conditions that support a life containing these elements.
The subject area that I will be exploring is a cross disciplinary one; it combines healthcare (hospitalisation of patients), mental health/quality of life and creative entertainment experiences. The precise question I will be addressing is the following: How can creativity improve the quality of life of hospitalised patients? I have opted to leave the question as a general one as there are many angles in which to approach creativity, experience and the improvement of wellbeing.
I am yet to define which area of hospitalisation I will be focusing on as a way to start. As area I refer to oncology (which is most likely the area I will focus on), pediatric care and so on. It is early to define which type of creative practise or approach will be used to explore the impact in patients however, it will be through several interventions through different artistic experiences that this will naturally take its own path.
WHY: Why will this research be of value to you – and the world?
This research will be of value because being hospitalised long term is already a difficult experience as it is, and in many cases, the patient can feel removed from normality and almost from society, as if everything going on is in the exterior. Patients spend hours and hours in hospitals and while not everyone might be in the conditions to attend to activities, there are still a number of hospitalisations that could be made more pleasant. Hospitalised patients may be at risk of experiencing a sense of fear and anxiety and this is why it is important not to completely remove them from the world that they were living before they had to be hospitalised.
Not only this but it is a stage in which many of us will experience at some point in our lives, whether that is while being young or old; and not just ourselves but close friends or family members. There are hospitals who already cater to their patients’ needs, however many of these are high-end private hospitals that many cannot afford.
Understanding an applicable model of creative entertainment for hospitalised patients could be a way to help them improve their motivation, sense of normality and give them and their family members a way of spending time together as breaks from the common dynamic of hospital bed and room.
Again, while some countries and hospitals are already focusing on ways in which they can help their patients’ mental health positively, there are still many hospitals, places of care and countries that do not; and regardless of their age, race, condition and state they should be helped throughout a time in which the most precious element, their health, is at stake.
HOW: How will you accomplish your project in practical terms? What will be your methodology, management strategy, and schedule?
First of all I will be looking at different existing and past models of care; various theories such as Jean Watson’s Theory of Human Caring, Margat Naumberg’s Art Therapy practise and those existing to mental health, elderly care home model’s of entertainment and look into practises within different countries and hospitals, cruise ships model of entertainment and so on. It is crucial to understand what exists, what has worked, what hasn’t, what has been accepted and what not and the reasons for this.
While doing this theoretical research, I will interview different health care professionals and hospitalised patients to understand their current state at hospitals and if they believe introducing any sort of entertainment experience that can spark human connection could be of positive impact.
I will proceed with several local organisations from different artistic disciplines to curate a programme that could be spread throughout two months and introduce such to both patients and professionals; a prior approval or feedback from psychotherapists, health care workers and managers will be absolutely necessary.
Some of the organisations that I am considering partnering with will range of disciplines; from theatre, puppetry, fine art, photography, comedy, cinema and so on.
At the minute, the one thing against this project besides fundings is the current pandemic as it would be delicate to let people into the hospital unless necessary. If the situation has not improved by the time needed, the interventions will have to change or will be adapted to being screened online or be directed to be done by the patients themselves.
Furthermore, this is a project that has both the potential to grow into a curatorial programme specialised in creating experiences for hospitals or it could show that in this field, creativity might not be the immediate remedy to hopelessness or anxiety; however, what is crucial is to test and find out, and redirect if needed.
I am yet to decide whether this is a project that will be focused solely in Catalonia or if will be done in London, at the minute however, London is doing much more progressive approaches in the field than catalonia and because of that it might be of more impact in to do it where it is most needed.
On the other hand, the lack of cultural appreciation in the arts and the lack of fundings could be an obstacle to even get through the first doors with such progressive idea and approach; in which case if this were to be a constant impediment to be able to carry on my interventions then I will move on to doing it in the UK, whether that is in London or somewhere where hospitalisations are naturally high and there is a need for this sort of project. Decentralisation is one of my main interests as well so this would be an interesting way of application as well.
Reading sources:
U.S. Department of Health and Human Services. (2000). Healthy people 2010: A systematic approach to health improve- ment. Retrieved May 30, 2007
A Prospective Descriptive Study Exploring Hope, Spiritual Well- Being, and Quality of Life inHospitalized Patients
Jean Watson’s Theory of Human Caring (Watson, 1999)
Creativity and Spirituality in Nursing, Implementing Art in Healing Mary Rockwood Lane, PhD, RN
Cancer, emotions, and cinema: a preliminary study about the changes experienced by oncological patients L. Sarno1, M.M. Ratti2, E. Soldi1, A. Derevianko3, C. Verusio
Ana Filipa Correia, Sofia Barbosa, Cinema, aesthetics and narrative: Cinema as therapy in substance use disorders,The Arts in Psychotherapy,Volume 60,2018
Shannon B. Dermer & Jennifer B. Hutchings (2000) Utilizing Movies in Family Therapy: Applications for Individuals, Couples, and Families, The American Journal of Family Therapy, 28:2, 163-180, DOI: 10.1080/019261800261734
Carla Gramaglia, Giovanni Abbate-Daga, Federico Amianto, Annalisa Brustolin, Stefania Campisi, Carlotta De-Bacco, Secondo Fassino, Cinematherapy in the day hospital treatment of patients with eating disorders. Case study and clinical considerations,The Arts in Psychotherapy.
Kristine Theurer, W. Ben Mortenson, Robyn Stone, Melinda Suto, Virpi Timonen, Julia Rozanova, The need for a social revolution in residential care,Journal of Aging Studies, Volume 35, 2015,Pages 201-210
