MODULE 1. INTRODUCTION
1.2 Connecting learners
Some people like to learn alone, others find learning together is more interesting. This course is designed to be used in either way. If you are studying this online alongside a cohort of students working on it over the same time period there are opportunities to interact with other students, ask questions, exchange information or propose a ‘flash debate’ about a recent news story.
Whether you are learning on your own or in a group please contribute to the ‘comments’ section at the end of each unit. A wide range of people are doing this course, with lots of different experiences and perspectives to bring to the discussion. It’s always interesting to see how other people have responded to the materials or the ideas they have to share. You can also share comment on twitter #PDoCMediaWatch
Note: Before starting this course please be aware that it covers some difficult and challenging issues. Although the focus is on media representation the course necessarily addresses the realities of family experience, it also deals with some complex ethical issues such as end-of-life decision-making. Seek support if you find some of the materials distressing. Be kind to yourself. When engaging with other students also please be respectful of different feelings and opinions.
Who is doing this course? Complete the poll below and find out.
Activity 1 – Introduce yourself and have a look at who else is doing the course
Please introduce yourself and tell us what interested you about doing this course by adding a comment in the section at the very bottom of this page. (Scroll down to the very bottom)
Additional Note: some healthcare professionals who have introduced themselves explain they work with ‘PDoC‘ patients – for anyone not familiar with that acronym it stands for ‘Prolonged Disorders of Consciousness” an umbrella term for coma, the vegetative and minimally conscious state.
Activity 2, optional…but recommended that you try this (unless you have direct experience of caring for someone in a vegetative state)
Just for yourself (you don’t have to share this!) do a sketch of how you imagine a patient in a permanent vegetative state. Don’t think too hard about this task – just give it a go! Try to include as much detail as possible. This isn’t a test of artistic ability, feel free to label parts of the picture to make things clear. Keep the picture safe (or photograph it on your mobile phone). You’ll be returning to it later to reflect on what might have shaped your own mental images of the vegetative state.
Tell us what interested you about doing this course by adding a comment in the section at the very bottom of this page. Also you might want to share your most recent or vivid memory of a media story about someone in a vegetative state.
Now mark this unit as ‘complete’ and move on to the next one.
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Hi, I’m Jenny – author of this course. I first became interested in this topic because of family experience, but I already specialised in research around how the media represent health, risk and science. Before my own family confronted this issue directly I guess one of the media images I remember is “Talk with Her’ -by Pedro Almodovar. I just googled that and found the Guardian described it as: “The parallel story of two men’s love for women who are in comas”. It’s a film that generates strong, sometimes quite different, reactions!
I remember an item in the news about a woman in a long term vegetative state. She gave birth because she had been raped. It brought home how very vulnerable people are in this condition.
I’m a healthcare professional working with patients in PDOC for many years. During this time I have seen patients living in a vegetative state for many years and the heartbreak of their families as they lose hope for any recovery. I feel the media has given false hope which means families have difficulty making best interests decision’s for their loved ones despite what the persons wishes may have been.
I’m a student and a journalist, and have spent quite a bit of time teaching and reporting on mental health awareness and suicide prevention, and I have recently been looking into entering the healthcare communications field after graduation. I became interested in this course as an opportunity to educate myself on the media discussion surrounding patients in a vegetative state, as it’s a subject I have very little outside knowledge on.
I’m a healthcare professional working with patients with ABI for over 10 years. I recently worked with a patient in MCS and I found my role with this pt to be very interesting, learning so much about the families journey through the initial shock to somewhat acceptance. I worked closely with the family and therapists’ in the private sector and NHS. I find the two sectors do not overlap enough without consistent coordination. I am hoping to work with many more PDOC clients. Also, last year i had a family member suffer a severe ABI who was in a coma for a few weeks.
Great to have a case manager looking at these materials. So sorry to hear about your family experience of coma too. I’ll be very interested to see your reflections drawing on your professional and personal knowledge of these issues.
I work with patients in PDOC and assess those going to court for important decisions.
I am aware that the media get the definitions confused between coma and vs. However I am also aware that people say that it gives a false impression which suggests that it is all doom and gloom for these patients – which is saddening for relatives. The message should be clearer that these patients deserve a proper assessment by a skilled team with the right assessment to determine their status before any assumptions can be made. Families need to be properly informed and I am not sure they always are.
Hello! I’m a lawyer on persons with disabilities’ rigths from Perú. As part of my work, I am interested in the representations of people with disability in media. I think there would be conections between how society thinks on a person with severe disability and a person in coma, in particular in relation with the incapacity to take decitions and how other should have to dicide on her/his behalf. Not that I believe this is a good assumption, but that’s society’s common approach.
Welcome Renata from Peru! I look forward to learning more from you about law, healthcare practices and media representations in Peru – especially the disability rights perspective.
I am a healthcare professional and have had experience of patients in query PDOC at the acute stage before they are transferred to specialist units for further assessment and have recently become part of a long term 24hour Neuro unit where we will be welcoming patients with PDOC for long term care.
Time after injury is such an important variable for PDoC [Prolonged Disorder of Consciousness Patients]. I found it really hard to unpack that for non-healthcare professionals in designing how this course unfolds. Given you are someone with experience of the acute state [“query PDoC”] and are now part of a a long term specialist setting I’ll be interested to hear any thoughts about the different perspectives in the longer term setting.
Hello, I am a studying for a MA in Bioethics and Medical law and my dissertation includes analysis of articles appearing in the media (relating to cases of dispute between doctors and parents e.g. Charlie Gard/Alfie Evans/Tafida Raqeeb). I am also a solicitor specialising in medical negligence and we sometimes act in cases where patients have suffered brain injury and are in minimally conscious states. I’m looking forward to learning more.
Good morning – It is great to wake up to see the course has already been started by such an interesting mix of people with journalistic, legal, healthcare and family expertise. I’m looking forward to following the discussion between you and to seeing your observations during the course.
I work for the charity Compassion in Dying. One of the services we provide is to help people make a ‘Living Will’, some of the people who want to do this have personal experience of PDOC. So I hope to some extent understand and learn about their experiences.
I am also interested in framing and how we talk about end-of-life choice more generally.
Your charity must have some interesting decisions to make about the images you choose for your website and how you ‘illustrate’ the value of “Living Wills” (Advance Decisions). I’ll be fascinated by what you make of the sections on the politics of visualisation.
Hi everyone, my husband was in a vegetative state for 2 years following a heart attack when he was 49 years old. I found that very few people understood what that meant. Many friends sent me well-intentioned stories of miraculous recoveries which hurt more than they helped. I needed honesty and a clear picture of what my husband’s prognosis was but i felt that the people caring for him (who were wonderful, dedicated people) shied away from telling it as it was. It was a very isolating experience having a loved one in PVS; I didn’t know where to seek help and no one pointed me in the direction of CDoC – which I stumbled on via Twitter. After two years, I applied for withdrawal of CANH – also an isolating experience with very little support from my CCG – and my husband subsequently died. I have never regretted that decision for a moment – but i do regret the lack of support during the process. I’m now writing about my experience in the hope that it will raise awareness of the issue. I’m hoping it could be published but we’ll see!
Thank you for joining the course. It is so important to have perspectives from family members who’ve faced having a loved one in a long-term vegetative state. So sorry to hear about how friends tried to help in such an unhelpful way – so many families have told us that. I hope this course can help us all think about how to raise public awareness and another outcome might be building guidelines for journalists to help them contextualise their reports in a more informative way
Hi, I am a Journalism and Politics student at Cardiff University just about to go into my second year and have joined this course because my interest in media representations and framing on certain issues, especially in areas of both physical and mental health. I have personal experience of a close family member who was in a vegetative state so I am interested in learning about it in more depth to develop my understanding.
Thanks for joining us. I’ll be very interested to see what you make of the course combining your personal knowledge and your Journalism/Politics learning too. This is certainly a topic that crosses Journalism and Politics so it is great you are doing a combined degree. When you get to the section on ‘Landmark cases’ you’ll find that disputes about vegetative patients have involved the Pope and key political figures and even triggered a constitutional crisis.
Great to see a few students from my own University here – welcome! Looking forward to hearing your media/journalism studies viewpoint on the materials.
I am studying a-level media and want to study it in university. This course has interested me as I am yet to use media to look at representations of health and medical issues and therefore I would like to widen my knowledge during this course.
Hi Grace – welcome to the course. I think you might be our only a-level student on the course so it will be great to hear what you make of it. There is some tough material in here so take care with that. Don’t hesitate to post any questions you have about the media studies angle too and you may find a University student doing the course responds to explain anything you’d like further explanation about.
I am a Media and Communications student so am always interested in expanding my knowledge on various issues within media and journalism, particularly in regards to issues of representation. I personally am fortunate enough to have never known someone who has been in a vegetative state, but I am very eager to learn about and become more knowledgeable on this issue.
Hi! My name is Lhorie and I have been working on a slow stream rehab, with complex neuro cases, majority of PDOC.
For the past 5 years I have seen low awareness and amazed on how we kept them alive with” the best quality of life” we can offer.
Media can sometimes be misleading , moreover to people who doesn’t really know PDOC, and times is moving forward ……..hence I consider joining the network of experts enlightening and empowering…….
I am an academic with a science background who does a lot of work (reading/writing/lecturing) on aspects of bioethics. I am fascinated by the work of the brain and DoC (and acutely aware that this is far more personal for some folks on here). I find Adrian Owen’s work on communicating with some minimally conscious people to be inspiring.
I’m also interested in media representations of science, but am largely self-taught in terms of methodology. I’m therefore hoping to pick up some tips from Jenny on making my analysis more robust.
If I’m honest I’m also curious to see how this online module runs as we face a world in which online teaching is going to be more prevalent.
Hi Chris – I look forward to seeing you comments on the ‘reporting law and science’ section in particular. As for being curious about how an online module runs – I welcome your curiosity and any comments you have on your experience of it as an online format.
Hi Chris – I look forward to seeing you comments on the ‘reporting law and science’ section in particular. As for being curious about how an online module runs – I welcome your curiosity and any comments you have on your experience of it as an online format
I am a nurse with many previous years experience in intensive care so have looked after some PDoC patients In the early stages of their condition. I have also looked after many patients who have suffered irreparable brain damage where there have been discussions regarding withdrawal of treatment. I have always been interested in the portrayal of health issues in the media and the impact that has on families understanding and acceptance of their loved ones conditions. I am currently doing a Masters in Healthcare Law and Ethics and through my studies have noticed In many cases the difference in the facts laid out in the court documents compared to what is presented by the media.
My name isSarah and I am doing this course for personal interest.