Brain Waves: Accessing creative cultural activity for people living with brain injury through and beyond the Covid-19 pandemic.
Lead Research Organisation:
King's College London
Department Name: Psychological Medicine
Abstract
Brain Waves will investigate the impact of the radical shift in the delivery of creative cultural activities for people living with brain injury during Covid-19 pandemic/lockdown and also the ongoing, and likely long-lived, changes in social interactions. We aim to move towards online/digital delivery, and to incorporate social distancing. In particular it will focus on the needs of two cohorts of people:
1. Patients recently discharged from hospital who, especially in the current context when community teams are less able to visit homes, fall between the cracks in terms of support.
2. People who access arts interventions as an essential part of their healthcare and recovery pathway and for whom self-expression through the arts is a key aspect of their reimagined identity and wellbeing.
It builds on the ground breaking work of Rosetta Life and partners through the Stroke Odysseys project, which itself is beginning the journey towards a delivery structure blending digital/online resources and face-to-face social distancing sessions and expands the benefits to other brain injuries including Parkinson's Disease, Dementia, Multiple Sclerosis and Motor Neuron Disease.
The work will have peoples' voices at the heart of the enquiry: people living with brain injury, healthcare professionals and artists involved in their care, and volunteer Ambassadors (that is, people living with brain injury who have already engaged in Rosetta Life's work and who want to offer peer support for people beginning their journey of rebuilding their lives post brain injury).
The project team brings together academics from a range of disciplines at King's College London, community investigators with expertise in performance, arts, healthcare and community engagement, and community partners (see below).
We will ask the following research questions: What is the impact of digital and socially distanced engagement in creative cultural activities on the wellbeing of people living with brain injury? And how do these impacts compare with current live face-to-face engagement? What are the benefits/opportunities here for the people who can access this online but wouldn't otherwise be able to, and how can they be reached?
How do we build community participation remotely, online and/or with social distancing in place? And how might this influence cultural programming? Do we need to rethink 'community' in general given the major shift to 'online'? Are there downsides i.e. can online sessions actually end up reinforcing loneliness the second they end and the participants alone again?
Is it feasible to upscale this participatory work via online resources? And if not, what is needed to support online delivery in socially distanced cultural programming? And how might these resources support the role of the socially engaged artist?
We will deliver:
An arts intervention that supports access to and engagement in creative cultural activities for at least 20 people living with brain injury - some of the most vulnerable and isolated people in our communities
A collaborative, key stakeholders partnership in the area of Kings Health Partners supporting the wellbeing of people living with brain injury
A set of online education training resources and a framework for artists, healthcare practitioners and the wider voluntary sector in order to test the potential for upscaling through socially distanced and online forums.
A research report publishing findings and the implications for arts, healthcare and community engagement practice
A conference event which draws together the key people and learning, made available across the UK via live streaming and recording.
1. Patients recently discharged from hospital who, especially in the current context when community teams are less able to visit homes, fall between the cracks in terms of support.
2. People who access arts interventions as an essential part of their healthcare and recovery pathway and for whom self-expression through the arts is a key aspect of their reimagined identity and wellbeing.
It builds on the ground breaking work of Rosetta Life and partners through the Stroke Odysseys project, which itself is beginning the journey towards a delivery structure blending digital/online resources and face-to-face social distancing sessions and expands the benefits to other brain injuries including Parkinson's Disease, Dementia, Multiple Sclerosis and Motor Neuron Disease.
The work will have peoples' voices at the heart of the enquiry: people living with brain injury, healthcare professionals and artists involved in their care, and volunteer Ambassadors (that is, people living with brain injury who have already engaged in Rosetta Life's work and who want to offer peer support for people beginning their journey of rebuilding their lives post brain injury).
The project team brings together academics from a range of disciplines at King's College London, community investigators with expertise in performance, arts, healthcare and community engagement, and community partners (see below).
We will ask the following research questions: What is the impact of digital and socially distanced engagement in creative cultural activities on the wellbeing of people living with brain injury? And how do these impacts compare with current live face-to-face engagement? What are the benefits/opportunities here for the people who can access this online but wouldn't otherwise be able to, and how can they be reached?
How do we build community participation remotely, online and/or with social distancing in place? And how might this influence cultural programming? Do we need to rethink 'community' in general given the major shift to 'online'? Are there downsides i.e. can online sessions actually end up reinforcing loneliness the second they end and the participants alone again?
Is it feasible to upscale this participatory work via online resources? And if not, what is needed to support online delivery in socially distanced cultural programming? And how might these resources support the role of the socially engaged artist?
We will deliver:
An arts intervention that supports access to and engagement in creative cultural activities for at least 20 people living with brain injury - some of the most vulnerable and isolated people in our communities
A collaborative, key stakeholders partnership in the area of Kings Health Partners supporting the wellbeing of people living with brain injury
A set of online education training resources and a framework for artists, healthcare practitioners and the wider voluntary sector in order to test the potential for upscaling through socially distanced and online forums.
A research report publishing findings and the implications for arts, healthcare and community engagement practice
A conference event which draws together the key people and learning, made available across the UK via live streaming and recording.
Publications
Estevao C
(2022)
A Protocol to Understand the Implementation and Experiences of an Online Community-Based Performance Arts Programme Through and Beyond the COVID-19 Pandemic, Brain Waves
in Frontiers in Rehabilitation Sciences
Estevao C.
(2022)
Brain Waves: Accessing creative cultural activity for people living with brain injury through and beyond the COVID-19 pandemic. A protocol paper.
in Frontiers in Rehabilitation Sciences, section Disability, Rehabilitation, and Inclusion
Bind RH
(2022)
Online singing interventions for postnatal depression in times of social isolation: a feasibility study protocol for the SHAPER-PNDO single-arm trial.
in Pilot and feasibility studies
| Title | Brain Waves The online arts movement helping brain injury survivors to tell their stories through music |
| Description | This is a piece I commissioned and edit regarding this project, written by the researcher, Elisabeth Taylor. Brain injury survivors will work with artists and musicians to tell their stories through music and movement, with a 12-week online programme of participatory performing arts workshops culminating in a final performance of a piece that has been constructed together. As far as we are aware this is the first study of its kind and will provide new knowledge in the field of arts for health and well-being, regarding the development of an online community of participants. |
| Type Of Art | Creative Writing |
| Year Produced | 2021 |
| Impact | Knowledge about the project |
| URL | https://www.inspirethemind.org/post/brain-waves |
| Title | Brain Waves: Forget me nots |
| Description | Living Lab 12 week programme (England) was delivered as part of Brain Waves and qualitative data has been transcribed and currently being analysed. The outputs include 2 films made by participants telling their stories of living with brain injury during the pandemic, which can be viewed on Vimeo, "Forget me nots" and "Spirals". |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2021 |
| Impact | Public and patients' engagement |
| URL | https://vimeo.com/540242150 |
| Title | Brain Waves: Spirals |
| Description | Living Lab 12 week programme (England) was delivered as part of Brain Waves and qualitative data has been transcribed and currently being analysed. The outputs include 2 films made by participants telling their stories of living with brain injury during the pandemic, which can be viewed on Vimeo, "Forget me nots" and "Spirals". |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2021 |
| Impact | Public and patients' engagement |
| URL | https://vimeo.com/636632346 |
| Title | How do you keep sane as a creative? An interview with our new columnist, novelist Natali J Simmonds |
| Description | How do you keep sane as a creative? An interview with our new columnist, novelist Natali J Simmonds I meet Natali over Zoom from her house in the Netherlands. This is not our first online meeting - in fact, online is how I met her a couple of years ago, attending one of her Raindance film school courses on self-branding for creatives. This time it's just the two of us talking one-on-one. I'm keen to know the person behind the novelist, marketing consultant, and creative lecturer, now also a regular columnist on Inspire the Mind. "I've always been interested in mental health", she says. "All my books are about women who are struggling." But where does this struggle come from? |
| Type Of Art | Creative Writing |
| Year Produced | 2023 |
| Impact | Read by almost 50 people, promoted collaboration with writer Natali Simmonds |
| URL | https://www.inspirethemind.org/post/how-do-you-keep-sane-as-a-creative-an-interview-with-our-new-col... |
| Title | On #StrangerThings4, Kate Bush, mental pain, and the monsters of the mind |
| Description | Welcome to my attempt to emotionally and cinematographically dissect the famous scene "Max's favourite song/Running Up That Hill" in #StrangerThings4, Chapter 4. This is a written piece in Inspire the Mind |
| Type Of Art | Creative Writing |
| Year Produced | 2022 |
| Impact | Have received feedback from readers |
| URL | https://www.inspirethemind.org/post/on-strangerthings4-kate-bush-mental-pain-and-the-monsters-of-the... |
| Description | Brain Waves: Accessing creative cultural activity for people living with brain injury through and beyond the Covid-19 pandemic. PI Carmine Pariante Brain Waves is a 12-week online performance arts programme developed for people with acquired brain injury (ABI) during the COVID-19 pandemic. For patients with ABI, arts interventions such as music, drama, dance or painting can already be included as part of statutory rehabilitation provision. The COVID-19 pandemic and subsequent lockdowns have magnified the challenges that individuals with ABI experience, with increased isolation and loneliness due to shutdown of services as well as increased risk of anxiety and depression. This project is examining the feasibility of adoption and roll-out across the UK. Additionally, findings will help inform other arts and health organisations how to develop and deliver online cultural activities. Publications: Our protocol paper has been reviewed and final post-review edits made. The final version has been submitted. Living Lab 12 week programme (England) delivered and qualitative data has been transcribed. Currently being analysed. The outputs include 2 films made by participants telling their stories of living with brain injury during the pandemic, which can be viewed here: Forget me nots - https://vimeo.com/540242150 Spirals - https://vimeo.com/636632346 Ambassadors from London have been supporting a new group in Donegal by attending online workshops. Stroke charity Different Strokes for Different Folks and arts organisations Zona Dance, Wall2wall Music and Derry Playhouse have been collaborating to form a new Brain Odysseys group in Donegal. Weekly sessions have been held on Zoom and in person, this 12-week programme culminated with a performance on 10th March 2022. Qualitative data from Donegal has been collected and is currently being transcribed. |
| Exploitation Route | Too early to say - award still active |
| Sectors | Education,Healthcare |
| URL | https://www.kcl.ac.uk/research/brain-waves |
| Description | Living Lab 12 week programme (England) delivered and qualitative data has been transcribed. Currently being analysed. The outputs include 2 films made by participants telling their stories of living with brain injury during the pandemic, which can be viewed here: Forget me nots - https://vimeo.com/540242150 Spirals - https://vimeo.com/636632346 A blog has been writtenby one of the researchers: Brain Waves: The online arts movement helping brain injury survivors to tell their stories through music https://www.inspirethemind.org/blog/brain-waves-the-online-arts-movement-helping-brain-injury-survivors-to-tell-their-stories-through-music |
| First Year Of Impact | 2021 |
| Sector | Education,Healthcare |
| Impact Types | Cultural |
| Description | Inspire the Mind - a digital mental health magazine |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Our digital magazine aims to reduce stigma on mental health We have reached >250K people so far, we have an average of 10K readers per month in the last months We have published >500 articles often by new and aspiring writers in science or with lived experience of mental health problems |
| URL | https://www.inspirethemind.org/ |
| Description | Understanding, predicting, and treating depression in pregnancy to improve mothers and offspring mental health outcomes Research Funder |
| Amount | € 11,293,266 (EUR) |
| Organisation | Innovate UK |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2022 |
| End | 10/2026 |
| Description | Covid research network |
| Organisation | Guy's and St Thomas' NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | We are leading a consortium of scientists interested in the molecular mechanisms underpinning the effects of COVID on the brain |
| Collaborator Contribution | We have led our first submitted publication and our first grant submission |
| Impact | 1) For submission to Molecular Psychiatry Neurogenesis is disrupted in human hippocampal progenitor cells upon exposure to serum samples from hospitalized COVID-19 patients with neurological symptoms Alessandra Borsini, PhD1*, Blair Merrick, MD2, Jonathan Edgeworth, PhD, MD3, Deepak Srivastava, PhD4,5, Anthony C. Vernon, PhD4,5, Gaia Nebbia, PhD, MD3, Sandrine Thuret, PhD4, Carmine M. Pariante, PhD, MD1 1 Stress, Psychiatry and Immunology Laboratory, Institute of Psychiatry, Psychology and Neuroscience, Department of Psychological Medicine, King's College London, UK 2 Centre for Clinical Infection and Diagnostics Research, Guy's and St Thomas' NHS Foundation Trust, London, UK 3 School of Immunology and Microbial Sciences, Guy's and St Thomas' NHS Foundation Trust, London, UK 4 Department of Basic and Clinical Neuroscience, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK 5MRC Centre for Neurodevelopmental Disorders, King's College London, UK 2) King's Together: Round 10 - Support for re-starting research and research careers post-COVID (NOT FUNDED): Gaining mechanistic insight "in vitro" on how hippocampal brain cells function isare disrupted upon exposure to serum from long-COVID-19 patients with neurological manifestations (neuro long-COVID-19) Role in project Name Faculty Department Position Joint Principal Investigator Carmine M. Pariante (F) Psychiatry, Psychology and Neuroscience Psychological Medicine Academic (Professor) Joint Principal Investigator Alessandra Borsini Psychiatry, Psychology and Neuroscience Psychological Medicine PDRA Joint Principal Investigator Tom Pollak Psychiatry, Psychology and Neuroscience Psychosis Studies Academic (Lecturer) Joint Principal Investigator Leonie Taams Life Sciences & Medicine Immunology, Infection & Inflammatory Disease Academic (Professor) Joint Principal Investigator Clare Brant Arts & Humanities English Language & Literature Academic (Professor) Joint Principal Investigator Anna Reading Arts & Humanities Culture, Media & Creative Industries Academic (Professor) CoI Sandrine Thuret Neuroscience Basic and Clinical Neuroscience Academic (Reader) CoI Tony Vernon Neuroscience Basic and Clinical Neuroscience Academic (Senior Lecturer) CoI Deepak Srivastava Neuroscience Basic and Clinical Neuroscience Academic (Reader) CoI Tim Nicolson Psychiatry, Psychology and Neuroscience Psychosis Studies Academic (Lecturer) CoI Ester Coutinho Neuroscience Clinical and Basic Neurosciences Research Fellow CoI Francesca Capon Life Sciences & Medicine Medical & Molecular Genetics Academic (Reader) CoI Beatrice Pembroke KCL Culture Team Not applicable Executive Director CoI Johanna Kieniewicz KCL Culture Team Not applicable Head of Education and Research Collaborations 3) - Rosetrees Trust - Borsini (PI) 01/02/2021-31/01/2022 £25,000 Effects of COVID-19 on the brain and gaining mechanistic insight "in vitro" - 1 hour/week |
| Start Year | 2021 |
| Description | BBC Radio 4 - Phantoms in the Brain, an interview on inflammation and mental health |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | BBC Radio 4 - Phantoms in the Brain, an interview on inflammation and mental health - |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://tr.ee/aobhoiaxi6 |
| Description | Brain Waves website |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | This is the webiste describing our main aims for this study, Brain waves: Accessing creative cultural activity for people living with brain injury through and beyond the Covid-19 pandemic. The COVID-19 crisis has led to a radical shift in the way in which people access culture, mirrored by the way relevant organisations make cultural activities happen. For people with brain injury, these challenges are more acute given their greater isolation and loneliness. Research (Headway) shows that, even before COVID, more than 70% of brain injury survivors experience a deterioration in their social life. We also know that 80% of the UK's 1.1m stroke survivors live at home and within 6 months of discharge less than 50% participate in meaningful activities and 25% no longer leave their homes. We will investigate the COVID-19 specific challenges faced by people living with brain injury and build on the work of the arts/health organisation, Rosetta Life and its Stroke Odysseys project. We will assess what impact social isolation has on access to cultural activity for these people living with brain injury, and help relevant organisations across the UK adapt their programming. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.kcl.ac.uk/research/brain-waves |
| Description | Brain Waves: The online arts movement helping brain injury survivors to tell their stories through music - by Elisabeth Taylor |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | During the pandemic, we have adapted to new ways of working, socializing, learning and taking care of ourselves. For disabled people, being able to participate remotely has increased the accessibility of arts and culture. We are researching an online performing arts programme for people with brain injury, and asking if this has similar benefits to those experienced in a 'real life' group. If so, should the online arts movement become part of the 'new normal'? This blog post launches Brain Waves, which will explore the translation of the stroke arts programme to the online world, and expand it to include anyone living with an acquired brain injury. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.inspirethemind.org/blog/brain-waves-the-online-arts-movement-helping-brain-injury-surviv... |
| Description | CNN Interview on COVID |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Carmine Pariante, talks live on CNN with Victor Blackwell on "re-entry syndrome" after COVID. Broadcasted on18 June 2021, the interview discusses the anxiety that people might feel after the lockdown, when we are invited to go back of our offices and to socialise with our friends. And what can we all do about it - both as employers and employees. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.youtube.com/watch?v=1HgXqHCXZe4 |
| Description | Immune reactions to severe Covid may trigger brain problems, study finds |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Interview to the Guardian related to one of my papers, Neurogenesis is disrupted in human hippocampal progenitor cells upon exposure to serum samples from hospitalized COVID-19 patients with neurological symptoms, https://www.nature.com/articles/s41380-022-01741-1 |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.theguardian.com/world/2022/oct/05/immune-reactions-to-severe-covid-may-trigger-brain-pro... |
| Description | Marking #WorldMentalHealthDay with a European Patients' Podcast |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | European Patients' Podcast: The Voice of Patients in Europe By eupatientsforum The European Patients' Podcast is your source for conversation and news around the world of patient advocacy and empowerment. This podcast is brought to you by the European Patients' Forum, the leading voice of patient organisations in Europe with 77 members across the continent. Marking #WorldMentalHealthDay with a European Patients' Podcast |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://anchor.fm/eupatients/episodes/Marking-WorldMentalHealthDay-with-the-EU-PEARL-project-e1ossck... |