Monday, 30 March 2020

World Autism Awareness Week (30 March-5 April) - some Covid-19 resources

As World Autism Awareness Week (30 March-5 April) has fallen within these difficult times, the National Autism Society has provided some information and resources to support autistic people and their families during the current phase of the Covid-19 crisis.

From the NAS website: 'This unprecedented period of change and disruption is very difficult for many autistic people and families. We have created some tips that we hope will help you. Remember it’s not forever and there are lots of things you can do that may make things easier. We have created some handy tips to help you during this time of uncertainty'.

You can follow this link (https://www.autism.org.uk/services/helplines/coronavirus/resources/tips.aspxto a couple of accessible and downloadable 'Tips for autistic people and families'. 

Other useful information is also available on the other pages of the NAS website, including a link to 'The Community' page (at: https://community.autism.org.uk/) which is a 'discussion forum for autistic people, their families and other wider network. It allows you to meet online and share your thoughts and experiences. It’s free to join and a great way to share support'.

Finally, there is information on how to contact the NAS 'Autism Helpline' and their 'Supporter Care team' at: https://www.autism.org.uk/services/helplines/main.aspx (however, in order to 'support the health and well-being' of their staff and volunteers, both these services are currently only responding to enquiries using email and webforms).

Please keep well, and please keep yourself and others safe! 

Tuesday, 24 March 2020

'The psychological impact of quarantine and how to reduce it' - The Lancet paper.


Following my last Blog 'Keep Calm ... Do Intensive Interaction ... but minimise the risks of Covid-19 transmission', this week I am summarising a very recent Lancet paper (Feb 26th) that was sent to me by one of my colleagues. This paper is: 

The psychological impact of quarantine and how to reduce it: rapid review of the evidence

By Brooks, S., Webster, R., Smith, E., Woodland, L., Wessely, S., Greenberg, N., & Rubin, G. of the Dept of Psychological, Medicine, King’s College, London. The Lancet (2020) 395, 912–20 (at -https://doi.org/10.1016/S0140-6736(20)30460-8).

The Covid-19 outbreak has seen many people being asked (or told) to isolate themselves at home or in some specific 'quarantine facility'. This review covered 24 studies of the effects of quarantine on people with SARS/MERS, Ebola, and H1N1/equine flu. The review defined quarantine as: 'the separation and restriction of movement of people who have potentially been exposed to a contagious disease to ascertain if they become unwell, so reducing the risk of them infecting others'. 

Why is this Review needed? Quarantine is often an 'unpleasant experience for those who undergo it. Separation from loved ones, the loss of freedom, uncertainty over disease status, and boredom can, on occasion, create dramatic effects'. Therefore, using quarantine 'as a public health measure' will requires us to recognise, and then reduce, any negative effects associated with it. 

The psychological impact of quarantine: 
  • All the quantitative studies covered by this review reported the psychological impacts of quarantine being generally identified as: 'emotional disturbance, depression, stress, low mood, irritability, insomnia, post-­traumatic stress symptoms, anger, and emotional exhaustion'. A number of qualitative studies also identified a range of other psychological responses to quarantine e.g. 'confusion, fear, anger, grief, numbness and anxiety ­induced insomnia'.
  • One study of staff working with SARS patients found that, after 9 days of quarantine they were significantly more likely to report: 'exhaustion, detachment from others, anxiety when dealing with febrile patients, irritability, insomnia, poor concentration and indecisiveness, deteriorating work performance, and reluctance to work or consideration of resignation'. 
  • A study comparing parents and children quarantined with those not quarantined found that 'the mean post-traumatic stress scores were four times higher in children who had been quarantined than in those who were not quarantined'.

Also, the review noted that there was 'mixed evidence' as to whether any individual characteristics or group 'demographics' were predictors of the effects of quarantine. However they did state that 'having a history of psychiatric illness' was associated with 'anxiety and anger 4–6 months' after quarantine.

What can be done to mitigate the consequences of quarantine? 
  • Keep it as short as possible: not surprisingly the review stated that - 'Restricting the length of quarantine to what is scientifically reasonable' and not adopting 'an overly precautionary approach', would minimise the effect on people.
  • Give people as much information as possible: also the review stated that - 'Ensuring that those under quarantine have a good understanding of the disease in question, and the reasons for quarantine, should be a priority'.
  • Reduce the boredom and improve the communication: 'Boredom and isolation will cause distress; people who are quarantined should be advised about what they can do to stave off boredom and provided with practical advice on coping and stress management techniques. The ability to communicate with one’s family and friends is also essential'.
  • The review also suggested that 'support groups specifically for people who were quarantined' could be helpful. One study found that 'having such a group and feeling connected to others who had been through the same situation could be a validating, empowering experience', and that such groups could provide people with the support they might not get from other people.

Health-care workers deserve special attention: the review also had a special section on the effects of quarantine on healthcare workers. The review pointed out that such staff 'might be concerned about causing their workplaces to be understaffed and causing extra work for their colleagues' and also that 'their colleagues’ perceptions could be particularly important'. Therefore, they state that 'it is essential that they feel supported by their immediate colleagues' (and also their managers). They state that 'organisational support has been found to be protective of mental health for healthcare staff in general and managers should take steps to ensure their staff members are supportive of their colleagues who are quarantined'.

Conclusion: Overall, this review suggests that 'the psychological impact of quarantine is wide­ranging, substantial, and can be long lasting'. If quarantine is necessary then 'officials should take every measure to ensure that this experience is as tolerable as possible for people'. 

According to the authors of this review, we should be: 
  • telling people in quarantine what is happening and why, and how long it will last
  • providing meaningful activities for them to do and clear communication while in quarantine 
  • ensuring basic supplies (e.g. food, water, and medical supplies) are available, and 
  • reinforcing the sense of altruism that people should, rightly, be feeling.
I was glad the author's identified that final point: that powerful 'sense of altruism' is and will be (and in fact always has been) the societal glue that gets us through our most difficult times. It is something that can't be quantified (there aren't any 'units' of human goodwill) but we know it when we see it, and we know just how vital it is to all our general well-being. Keep well and keep safe!

Friday, 20 March 2020

Keep Calm ... Do Intensive Interaction ... but minimise the risks of Covid-19 transmission.

Following on from my Blog last week ('Keep Calm ... and Do Intensive Interaction ... but wash your hands') on implementing NHS guidelines on minimising the risk of Covid-19 transmission (please see https://www.nhs.uk/conditions/coronavirus-covid-19/ for the latest Dept of Health advice), things have now moved on significantly in terms of the trajectory of the virus' infection rates. 

We now need to do everything we can to protect our most vulnerable people, ourselves and our families, and also our hard-pressed colleagues continuing their vital work within our health and care services; increasingly also for families, with the closure of so many schools and adult day services.

These are certainly unprecedented times, and the UK Government is telling us that:

Everyone should do what they can to stop the coronavirus spreading. It is particularly important for people over 70, those with long-term health conditions, those who are pregnant, and anyone with a weakened immune system. Those people most 'at risk' include many of our service users and family members e.g. people with profound and multiple disabilities, and those who have additional health conditions which may make them more susceptible to the effects of the Covid-19 virus, should they contract it

So the UK Government is telling us - Stay at home if you have coronavirus symptoms: if you have either a high temperature (i.e. you feel hot to touch on your chest or back) or a new, continuous cough, which means coughing for a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual).

It is also recommended that you should self-isolate if you have been in recent contact with someone who has the virus, or is showing the Covid-19 symptoms (as described above), or if you have recently travelled to or from any high risk locations. 

Everyone’s first priority now has to be the safety of all others, especially the most vulnerable members of our communities ... so the principle should be ‘if in doubt, stay away’.

If you are showing the symptoms the UK Government advice is: do not go to a GP surgery, pharmacy or hospital - instead use the local NHS 111 online coronavirus service (at: https://111.nhs.uk/covid-19/) to find out what to do in your local area.

Also we all need to:
  • wash your hands with soap and water often – do this for at least 20 seconds
  • always wash your hands when you get home or into work
  • use hand sanitiser gel if soap and water are not available
  • cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • put used tissues in the bin immediately and wash your hands afterwards
  • avoid close contact with people who have symptoms of coronavirus
  • only travel on public transport if you need to - work from home, if you can
  • avoid social activities, such as going to pubs, restaurants, theatres and cinemas and avoid events with large groups of people
  • use phone, online services, or apps to contact your GP surgery or other NHS services
... and:
  • do not touch your eyes, nose or mouth if your hands are not clean
  • do not have visitors to your home, including friends and family
But yes, even though these are unprecedented times: 'Lets keep calm and carry on ... and continue to do Intensive Interaction'

Our service users and family members will still need positive and proactive social interactivity to maintain their social and psychological well-being; just as they did a few weeks ago, before this crisis started. Perhaps they will seek it and need it even more so during these times of unprecedented change to many familiar routines, and the increased anxiety now evident in much of our general behaviour. But we will also still need to do Intensive Interaction because that is in our nature; we are just those kinds of people. 

But let's make sure that we follow all the necessary steps to minimise the risk of a potentially fatal viral transmission to many of our most vulnerable people. 

Many of those we care for will not be aware of, or understand the need for increased infection control measures, but they will still need and expect some form of responsive Intensive Interaction engagement. Also many of those people who benefit from Intensive Interaction may not understand the wider societal implications of the Covid-19 crisis, but many do have the emotional awareness that means they are especially well attuned to the emotion state of those around them; we can’t take away the anxiety that we are all currently feeling, but we can take steps to manage it as best we can. The more contained we as practitioners can be, the more we can promote calmness in those we’re interacting with.

Also, during this current crisis it may be necessary to find ways to adapt our strategies for social engagement, avoiding when and where we can, or at least minimising all unnecessary physical contacts or close physical proximity (although for many this will still be required to meet their functional care needs). Instead it may be necessary to use Intensive Interaction strategies that can be enacted with more social distance e.g.: vocal echoing or exchanges of vocal/verbal sequences; using vocal or verbal commentaries on a person's actions (or the actions of others in a shared environment); using more, or more kinds of behavioural mirroring, including developing increased turn-taking in various non-physical contact forms; finding more ways of exchanging eye contact and mirrored facial signalling; using more forms of joint focus activity that can be more safely enacted with some level of social distancing. 

It will be the responsibility of all our practitioners and their managers to discuss and agree the best ways to make any such adaptations to their normal and individualised social engagement repertoires for those people they support and care for. This may not always be easy, but in many cases it may well become absolutely necessary.

Please do everything you can to keep yourself, and all those you care for safe and well!

p.s. On my Blog next week I will be summarising a very recent Lancet paper on 'The psychological impact of quarantine and how to reduce it: a rapid review of the evidence' by Dr Samantha Brooks et al, of the Dept of Psychological Medicine at Kings College London.

p.p.s. You can also see a message of support to all our Intensive Interaction community from Dr Dave Hewett OBE (Intensive Interaction Institute director) on his Facebook page at:  https://www.facebook.com/dave.hewett.71/videos/10156817864551123/ .  

Thursday, 12 March 2020

Keep Calm ... and Do Intensive Interaction ... but wash your hands!

What with everything going on at the moment that is so negative and scary ... for my Blog this week I just thought I would recirculate this 'Keep Calm ... and Do Intensive Interaction' sign that was doing the rounds a few years ago. So yes, lets keep calm and continue to do Intensive Interaction ... but obviously making sure to wash our hands and follow all the necessary NHS guidelines on minimising the risk of transmission to our more vulnerable people (see: https://www.nhs.uk/conditions/coronavirus-covid-19/).  

No photo description available.

p.s I have forgotten who first got this sign done and circulated it ... but many, many thanks to you!

Friday, 6 March 2020

'Intensive Interaction in Dementia': some useful links

At our most recent Leeds Intensive Interaction Regional Support Group meeting (see my Blog of 25/03/19 about Regional Support Groups), I asked which issues attendees would like to discuss at out next meeting. One person asked if we could discuss 'Intensive Interaction and Dementia'. 

So, in the spirit of community action that defines our Intensive Interaction group members, one of our members (Specialist Speech and Language Therapist Lynnette Menzies) then very kindly sent me a list of links about this very issue i.e. 'Intensive Interaction in Dementia' and about 'Adaptive Interaction' (see my Blog of 27/11/17 about Adaptive Interaction and its relationship to Intensive Interaction. This Blog also acknowledges the Intensive Interaction work of Charly Harris and Dr Emma Wolverson published in the Journal of Dementia Care).

There is some really interesting and useful stuff here, and we plan to revisit this same issue at an upcoming RSG group meeting.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0180395 - a full paper: 'Communicating with people living with dementia who are nonverbal: The creation of Adaptive Interaction' published on the PLOS|One online research journal.

https://thepsychologist.bps.org.uk/volume-28/december-2015/giving-voice-people-advanced-dementia - 'Giving a voice to people with advanced dementia' by Amanda Henwood & Maggie Ellis published in 'The Psychologist' magazine.

https://www.scie.org.uk/dementia/advanced-dementia-and-end-of-life-care/advanced-dementia/communication.asp - a piece on 'Communication in advanced dementia' on the website of  the Social Care Institute for Excellence.

https://www.st-andrews.ac.uk/stories/2019/dementia/ - 'Living a good life with dementia: 
New methods of communicating with and entertaining people living with dementia' a piece from St Andrews (if you scroll down you can access a number of useful YouTube clips).

https://www.youtube.com/watch?v=9Ho4b89H-VM - a long YouTube piece including Maggie Ellis giving a lecture on 'How dementia helps us to better understand our common humanity'.

https://www.youtube.com/watch?v=3wlHAIJmfKg -  a radio interview with Dr Maggie Ellis on 'Adaptive Interaction'.

https://www.youtube.com/watch?v=L6JmzNEQZjk - a short STV report on 'Reaching people with severe dementia: Adaptive Interaction in action'.

I would also like to point people to the 'Intensive Interaction in Dementia' Facebook Group available at https://www.facebook.com/groups/1142169855812944/ - which has some truly brilliant stuff on there - including some extremely powerful and highly instructive video posted by Rachel Woodhouse. I implore you to join and contribute to this group if this is an area that is of personal or professional interest to you. 

So thanks so much Lynnette, and please feel free to comment on any personal experiences you have had using Intensive Interaction with people with dementia - I think that this a profoundly under researched area where the power of Intensive Interaction/Adaptive Interaction is, as yet, vastly under realized. 

For my blog today I am abridging a recent British Medical Journal 'Opinion' piece (14/01/21) People with an intellectual disability...