Looking for distance carers in palliative care

As you may already know, I am currently doing a PhD at Oxford Brookes University. As part of my doctorate, I am conducting a research study exploring the characteristics, needs and experiences of carers at a distance in palliative care, and if and how they use the internet in their role as carers. At the moment, I am recruiting distance carers in palliative care who are willing to fill in a short online survey.

are you caring at a distance

So if you:

– Are at least 18 years old.

– Have a relative who is in a hospice or receiving palliative care at home.

– Live away from your ill relative (this could be a different town, or a different country), but still provide any kind of significant support.

Please consider participating in this study by filling in this online survey:

https://brookeshls.co1.qualtrics.com/SE/?SID=SV_57rCDTlSu2ZVrqR

You may also wish to visit the project’s Facebook page, or follow the twitter updates at @DistanceCarers.

 

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Palliative care and the media: newspapers, television…. and the internet?

I recently attended the 10th Palliative Care Congress (March 2014, Harrogate, UK). One of the sessions was a masterclass called Meeting with the Media. The following is my take on it.

This session was presented by Dr Helen Jamison, deputy director at the Science Media Centre. It was a very engaging session, where we discussed common issues around “navigating the media minefield” in palliative care. Dr Jamison focused primarily on the Liverpool Care Pathway media storm, although she also gave a very good roundup of tips for media work. I would recommend that you visit the Science Media website and have a look at the excellent work that this charity does, aimed at journalistsscientists and press officers.

The workshop was full of practical, sound advice on how to deal with the media. However, I felt that one key aspect was lacking. This was advice on how to use the Web (including social media) for media work. I am not going to dispute that a good percentage of people get their science news through newspapers, TV and/or radio. That is true. But we must not overlook the fastest, most effective tool that we have:  the internet. The Web. Scientists and charities like Science Media Centre need to be skilled at using the Web to disseminate scientific evidence and counteract harmful headlines. This is as important knowing how to deal with TV and newspapers, because a) journalists are already using  it (including radio and TV journalists, who may use it as an addendum to their offline strategy), and b) it will simply become the main media in the coming years. Because of the nature of the Web, information (good or bad) can rapidly become viral. We need to find strategies to counteract viral bad science, and this must be done from within.

Please do not take this as a criticism to the work of this charity. I think it is crucial. But I also think it is crucial that we have sound guidelines on how to use the Web for media work.

Sexual intimacy in palliative care

Over the last few days I have attended, and thoroughly enjoyed, the 10th Palliative Care Congress in Harrogate (UK). One of the best sessions that I attended during this conference was the masterclass Supporting sexual intimacy in palliative care, by community clinical nurse specialist in palliative care Dr Bridget Taylor and cancer nurse and psychosexual therapist Dr Isabel White. The following is my take on it.

Adam and Eve, sculpture by Ellen Kolk (1970).  Photo credit: Creative Commons by Tony Bowden

Adam and Eve, sculpture by Ellen Kolk (1970).
Photo credit: Creative Commons by Tony Bowden

This workshop highlighted the importance of sexuality and intimacy at the end of life, a topic that is often overlooked, because a) most cultures tend to be embarrassed to ask about it, and b) we seem to feel that when one is dying, intimacy is not that important. The session gave a very interesting overlook on the topic, and captured really well the different aspects of sexual intimacy: it is not just about intercourse, but, rather, a range of behaviours and emotions around intimacy, commitment and passion. This is known as the triangular theory of love (Sternberg, 1986).

I was particularly impressed by the respect and tender manner of Taylor & White, who used very powerful case studies to illustrate their arguments. My take-home message after this session was learning the importance of talking about sex. We all know how to talk about it when we have a cold: “I have a sore throat”, “My head hurts”, “I have a blocked nose”, “I feel drowsy”, “I need to sleep in order to feel better”, and so on. But when it comes to sexuality we often do not know how to talk about it, because we are not used to discussing it. It is more often than not a topic that only lives within ourselves. If we never talk about sex, even when things are fine, we will not have learnt a way to talk about it. This, in turn, will probably make it difficult to talk about it when problems arise, and very challenging to find a way to ask our patients about it.

We have to find our own language to talk about sex.

The authors of this workshop have kindly made the slides available through the PCC website.

Further reading:

Sternberg, R. J. (1986). A triangular theory of love. Psychological review93(2), 119.

Taylor, B. (2014). Experiences of sexuality and intimacy in terminal illness: A phenomenological studyPalliative medicine.

Social media and the healthcare establishment: a power struggle

You may be already familiar with the controversy that a couple of newspaper articles have generated regarding the tweets of Lisa Adams, a woman who is terminally ill, and who has been openly blogging and tweeting about her journey as a patient diagnosed with an incurable cancer. She is not alone in doing this. Dr Kate Granger is also a young woman diagnosed with a terminal cancer, as well as a doctor. She too has chosen to share her experience online, including very personal feelings and pictures of her ordeal.

One could look at this anecdotes phenomenon from many angles, and indeed most have been covered: ethical, public health, medical, social media, patient engagement… To me, the essence of the debate is a very old one: it all boils down to a power struggle, because

the irruption of the Web 2.0 has fostered a paradigm shift within the healthcare landscape.

Not many years ago, the healthcare system was dominated by what has been called the biomedical model. In this model, doctors* knew best, and patients did not question what they were told. Patients were passive recipients of the medical knowledge. We could represent this model in a very simple diagram:

bimedical model

More recently though, things have changed. The biomedical model is slowly but steadily being replaced by the biopsychosocial model. There are many differences between this model and the traditional, biomedical model. I will only focus on the different doctor-patient interaction. In this model, patients take a proactive role. Instead of being passive, the patient has become an engaged and empowered stakeholder, thus changing the doctor-patient relationship:

biopsychosocial model

In my opinion, the debate about patients’ tweets is a symptom that shows how the establishment struggles with this new paradigm. I think it’s interesting how so many people are scared of social media, because it gives power to the people. Until now, it was just us (doctors, journalists, politicians, scientists…) who told things the way we thought  they were. Our vision of the world was the right one, and “the lay person” listened. But now, with the Web 2.0 (and this includes social media), everyone and anyone can tell things the way they think they are, and our version of the story is no longer the right one. And we are forced to listen.

It is time that the self-appointed experts give some room to the patients, because thanks in part to social media they are going to take the centre stage whether you like it or not. After all, is this not the essence of patient-centred care?

* Just to make this post easier to read, I chose to simplify and use the word “doctor”. Of course I mean the medical establishment, including nurses, psychologists, psychiatrists, physiotherapists and so on. I’m sure you understand what I mean when I say “doctor”.

Twitter and Palliative Care

It is not often that I come across a paper that I find not only interesting, but also useful. And it is even rarer for me to read a scientific paper about social media that tells me something I did not know already. As other fellows geeks will very well know, real news about social media nowadays come almost exclusively from blogs and from Twitter.

palliative-care-social-media-twitter

So I was very pleased to find Craig Nicholson’s brief paper titled Palliative care on Twitter: who to follow to get started. In it, Nicholson suggests a number of Twitter accounts to follow, if you are interested in palliative care. Not only does he list a few of them (such as @kesleeman AKA Dr Katherine Sleeman, @EAPCOnlus AKA the European Association of Palliative Care or @thewpca AKA Worldwide Palliative Care Alliance, among others), but he also describes the account in a short paragraph: who is it, and what will you get from them. 

It is very refreshing to see that despite all the social-media-hating-dinosaurs in the health care world, there is still a minority of e-pioneers getting good publications out there, and this is one of them.

If you are new to Twitter and interested in palliative care, this is the paper you need to read.

Telehealth and eHealth: Ageing well: how can technology help? The RSM Conference 2013

For the last couple of days, I have attended the Annual Conference of the  Royal Society of Medicine’s (RSM) “Telehealth and eHealth 2013 Conference: Ageing well: how can technology help?”, organised by the RSM’s Section on Telehealth & eHealth. Personally, it has been a hugely inspiring conference, because it focused on the three key elements of this thing we call eHealth. I firmly believe that the 3 edges of the triangle of eHealth should be patient-centredness, good use of technology and public health:
RSM logo

  • This conference has been highly patient-centric. I recently attended the Medicine 2.0’13 Conference and was disappointed of how much it was focusing on the business and data-harvesting aspects of eHealth. This is only my perception, which is probably due to the fact that I have always worked, and am passionate about, the public sector. So it was great to really feel how all these outstanding speakers (Mary Baker, Charles Lowe, Baroness Masham of Ilton, Malcolm Fisk or Rabbi Yehuda Pink, amongst others) do genuinely care about the people, about the patients. I was also pleasantly surprised by the humble and realistic talk about care homes by BUPA Care Services Medical Director Andrew Cannon.
  • Needless to say, this conference was very strong on how technology can help older people live healthier lives, by improving their quality of life (QoL). Having worked at the University of Oxford’s PROMs Group for a while, I know well the theoretical and methodological underpinnings of PROMs, so I completely agree that PROMs must be our weapons of choice to measure the impact of eHealth on people’s QoL. Two of my favourite quotes from the last two days are very illustrative of the approach to technology and health care during this conference. During his presentation, Dr M Vernon said that “we can use the technology we already have to improve health care”. I could not agree more: we must keep things as simple and as affordable as possible, if we want eHealth to become really mainstream in health care. My other favourite quote was by Rabbi Y Pink: “technology is God’s gift to humanity to improve our quality of life”. This made an atheist like myself smile, in a good way. It is crucial that relevant people in the community can pass the message in such a clever, easy to understand manner.1wimpolest
  • Last, but not least, I did thoroughly enjoy the focus on public health that this event had. In my humble opinion, there is still a lot (a lot) to be done in terms of public health and eHealth. It was great to learn about relevant initiatives from the European Commission, such as the imminent Green Paper on mHealth. I intend to post about this when it is published in a few weeks.

Finally, I was personally very interested to hear about many existing end of life/palliative care and dementia eHealth projects.

This is my take on this year’s RSM Telehealth and eHealth Conference. I would be very interested to hear your views, either via Twitter or as a comment to this post (below).