Creating a 'Health Talk Online' web-based resource on family experiences of disorders of consciousness
Lead Research Organisation:
CARDIFF UNIVERSITY
Department Name: Journalism Media and Cultural Studies
Abstract
Developments in medical technologies and procedures are associated with a rapid rise in the number of people surviving in prolonged disorders of consciousness (e.g. 'vegetative' and 'minimally conscious' states). However there has been relatively little research, and few resources, to help people to deal with the issues that arise when they have a loved one in
such a condition. Our original research demonstrated the need for high-quality internet resources to support these families and to serve as a resource for relevant professionals. The proposed project builds on our original study of 30 people with a relative in a disordered state of consciousness who were interviewed about their experience of the care and treatment of their loved one (e.g. a partner, parent, offspring or sibling). Although the focus of this original research was 'decision making' these interviews (which lasted an average of 4-5 hours) form a rich data-base in which families talk about a wide variety of issues from the shock of the original injury and the process through which a diagnosis was reached over time, through to the long term issues facing families (emotional and practical) and the complex choices in which they may be involved (e.g. where their loved one should be cared for, how to manage their affairs, what specific medical treatments should be pursued or forgone).
The original interview study was conducted using qualitative methods based on rigorous social science research methodology and all interviews were conducted by one or other of the senior researchers submitting this bid. These data will be combined with interviews with an additional 8 interviews (videoed where possible) and the entire corpus will be re-analysed for the purpose of writing 20-25 summaries on the issues that are most important to these families in order to produce a resource to be published on 'HealthTalkOnline' http://www.healthtalkonline.org/) - a widely used site (5 million hits /100,000 unique visitors per month) certified under the Department of Health's Information Standard scheme and winner of severalawards for the innovative form, accuracy and quality of the information it provides (e.g. British Medical Association Patient Information Awards, Health Care IT Effectiveness Awards and Social Innovation awards - see www.healthtalkonline.org/Overview/Awards_healthtalkonline).
The development of the new HTO section of the website about disorders of consciousness will follow the good practice model already established through over 70 HTO projects (see attached list of HTO modules). The topic summaries will be drafted by the senior researchers who collected the original data under the guidance of Sue Ziebland, and drafts will be discussed and reviewed with her, and by a member of an expert advisory panel. The panel will include family members/carers, social scientists and health and social care professionals. The summaries of key issues will be illustrated with clips from the interviews in video, audio or text format and the researcher will identify, in consultation with the advisory panel, a list of respected national and local organisations and websites that provide other kinds of information and support, for inclusion on the site.
Prior to publication of the material on the HTO website by project partners DIPEx we will coordinate two focus groups to ensure that the new site reflects the experiences of families and that we have correctly identified the issues that are important to a broad range of people. This piloting will include participants being invited to explore the draft website and complete a brief questionnaire. After publication the site will be promoted and developed for use by a wide variety of users/stakeholders.
such a condition. Our original research demonstrated the need for high-quality internet resources to support these families and to serve as a resource for relevant professionals. The proposed project builds on our original study of 30 people with a relative in a disordered state of consciousness who were interviewed about their experience of the care and treatment of their loved one (e.g. a partner, parent, offspring or sibling). Although the focus of this original research was 'decision making' these interviews (which lasted an average of 4-5 hours) form a rich data-base in which families talk about a wide variety of issues from the shock of the original injury and the process through which a diagnosis was reached over time, through to the long term issues facing families (emotional and practical) and the complex choices in which they may be involved (e.g. where their loved one should be cared for, how to manage their affairs, what specific medical treatments should be pursued or forgone).
The original interview study was conducted using qualitative methods based on rigorous social science research methodology and all interviews were conducted by one or other of the senior researchers submitting this bid. These data will be combined with interviews with an additional 8 interviews (videoed where possible) and the entire corpus will be re-analysed for the purpose of writing 20-25 summaries on the issues that are most important to these families in order to produce a resource to be published on 'HealthTalkOnline' http://www.healthtalkonline.org/) - a widely used site (5 million hits /100,000 unique visitors per month) certified under the Department of Health's Information Standard scheme and winner of severalawards for the innovative form, accuracy and quality of the information it provides (e.g. British Medical Association Patient Information Awards, Health Care IT Effectiveness Awards and Social Innovation awards - see www.healthtalkonline.org/Overview/Awards_healthtalkonline).
The development of the new HTO section of the website about disorders of consciousness will follow the good practice model already established through over 70 HTO projects (see attached list of HTO modules). The topic summaries will be drafted by the senior researchers who collected the original data under the guidance of Sue Ziebland, and drafts will be discussed and reviewed with her, and by a member of an expert advisory panel. The panel will include family members/carers, social scientists and health and social care professionals. The summaries of key issues will be illustrated with clips from the interviews in video, audio or text format and the researcher will identify, in consultation with the advisory panel, a list of respected national and local organisations and websites that provide other kinds of information and support, for inclusion on the site.
Prior to publication of the material on the HTO website by project partners DIPEx we will coordinate two focus groups to ensure that the new site reflects the experiences of families and that we have correctly identified the issues that are important to a broad range of people. This piloting will include participants being invited to explore the draft website and complete a brief questionnaire. After publication the site will be promoted and developed for use by a wide variety of users/stakeholders.
Planned Impact
HealthTalkOnline [HTO] is believed to be unique in the field of healthcare communication and each one of its 70 modules have great potential to improve the well-being of the population:
- directly through use by patients/carers and the public and
- indirectly (through use in training health and social care professionals) in improving how services are delivered.
Beneficiaries thus include: individuals, general publics, professionals and policy makers.
The new proposed section about disorders of consciousness [DOC] will be valuable to families with a relative in such a condition as they are often very isolated and already routinely use the internet in search of information and support. However, it was clear from our original research that some of the sites people find on the web perpetuate myths and misinformation about DOC; others can be misleading simply because they are complicated and confusing for the lay reader; and some aspects of the experience of having a loved one in a vegetative or minimally conscious state are absent from the web altogether and may be difficult to discuss even among family and friends. The proposed development on this new web resource in the context of the HTO website will provide accurate, balanced and accessible information, presented in a clear and engaging way - offering families reassurance that they are not alone, and giving them the impetus or confidence to tackle unresolved issues either alone or by seeking professional help. Good quality information resources could also help families to help the medical team working to make 'best interests' decisions for people in DOCs. The general public, friends and colleagues, can also learn how to support people who have someone in their family in a DOC.
The site will also be used in education and training of health and social care professionals. A recent survey of teachers in Higher Education in the UK found that HTO summaries and video clips are being used to teach on a wide variety of courses for health professionals and a 'teaching and learning' area of HTO has now been launched. Interview material used in this project will contribute to video montages for use in teaching and professional development.
In addition, Sue Ziebland and The Health Experiences Research Group which she heads up is working with NICE to inform the development of guidelines and the new Quality Standards through secondments and secondary analyses of the archive of over 2,000 interviews. The analyses on experiences of DOC will feed into this process. Secondary analysis of the interviews on HTO is also being used to help improve service delivery by incorporating trigger films featuring families' experiences into 'experience-based co-design' and 'experience led commissioning'.
The impact of the new section will be supported by the fact that the website is available free on the Internet and advertised via posters and leaflets distributed to GPs and hospital clinics, libraries and information centres in order to maximise access and familiarity. It is recommended by staff at relevant helplines as well as through information prescriptions. Our research partner, the DIPEx charity, is continually optimising the site to further increase Google access and HTO has links from over 500 other sites including NHS Choices and the Cochrane Library. HTO regularly features in the media on lists of the top health websites and is a resource on the BBC website and for BBC radio 4 programmes such as Woman's Hour and Case Notes. Doctors are increasingly being encouraged to recommend reliable websites to their patients and the promotion of 'information prescriptions' for patients means that many more doctors and academics recommend websites; HTO has a reputation as a site that can be trusted because of the values in its design and the way each section is developed based on rigorous social science research.
- directly through use by patients/carers and the public and
- indirectly (through use in training health and social care professionals) in improving how services are delivered.
Beneficiaries thus include: individuals, general publics, professionals and policy makers.
The new proposed section about disorders of consciousness [DOC] will be valuable to families with a relative in such a condition as they are often very isolated and already routinely use the internet in search of information and support. However, it was clear from our original research that some of the sites people find on the web perpetuate myths and misinformation about DOC; others can be misleading simply because they are complicated and confusing for the lay reader; and some aspects of the experience of having a loved one in a vegetative or minimally conscious state are absent from the web altogether and may be difficult to discuss even among family and friends. The proposed development on this new web resource in the context of the HTO website will provide accurate, balanced and accessible information, presented in a clear and engaging way - offering families reassurance that they are not alone, and giving them the impetus or confidence to tackle unresolved issues either alone or by seeking professional help. Good quality information resources could also help families to help the medical team working to make 'best interests' decisions for people in DOCs. The general public, friends and colleagues, can also learn how to support people who have someone in their family in a DOC.
The site will also be used in education and training of health and social care professionals. A recent survey of teachers in Higher Education in the UK found that HTO summaries and video clips are being used to teach on a wide variety of courses for health professionals and a 'teaching and learning' area of HTO has now been launched. Interview material used in this project will contribute to video montages for use in teaching and professional development.
In addition, Sue Ziebland and The Health Experiences Research Group which she heads up is working with NICE to inform the development of guidelines and the new Quality Standards through secondments and secondary analyses of the archive of over 2,000 interviews. The analyses on experiences of DOC will feed into this process. Secondary analysis of the interviews on HTO is also being used to help improve service delivery by incorporating trigger films featuring families' experiences into 'experience-based co-design' and 'experience led commissioning'.
The impact of the new section will be supported by the fact that the website is available free on the Internet and advertised via posters and leaflets distributed to GPs and hospital clinics, libraries and information centres in order to maximise access and familiarity. It is recommended by staff at relevant helplines as well as through information prescriptions. Our research partner, the DIPEx charity, is continually optimising the site to further increase Google access and HTO has links from over 500 other sites including NHS Choices and the Cochrane Library. HTO regularly features in the media on lists of the top health websites and is a resource on the BBC website and for BBC radio 4 programmes such as Woman's Hour and Case Notes. Doctors are increasingly being encouraged to recommend reliable websites to their patients and the promotion of 'information prescriptions' for patients means that many more doctors and academics recommend websites; HTO has a reputation as a site that can be trusted because of the values in its design and the way each section is developed based on rigorous social science research.
Publications
Edgar A
(2015)
Interpreting chronic disorders of consciousness: medical science and family experience.
in Journal of evaluation in clinical practice
Kitzinger C
(2014)
Grief, anger and despair in relatives of severely brain injured patients: responding without pathologising.
in Clinical rehabilitation
Kitzinger C
(2016)
Court applications for withdrawal of artificial nutrition and hydration from patients in a permanent vegetative state: family experiences
in Journal of Medical Ethics
Kitzinger J
(2017)
When 'Sanctity of Life' and 'Self-Determination' clash: Briggs versus Briggs [2016] EWCOP 53 - implications for policy and practice.
in Journal of medical ethics
Kitzinger J
(2018)
Deaths after feeding-tube withdrawal from patients in vegetative and minimally conscious states: A qualitative study of family experience.
in Palliative medicine
Kitzinger J
(2017)
Causes and consequences of delays in treatment-withdrawal from PVS patients: a case study of Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32.
in Journal of medical ethics
Kitzinger, C
(2015)
Court applications for withdrawal of artificial nutrition and hydration from patients in a permanent vegetative state: family experiences
in Journal of Medical Ethics
Kitzinger, C
(2015)
From research to creating social change through art and engagement
| Title | Film/performance: Promise through the lens of time (Sept 2014) |
| Description | Multidisciplinary collaboration between academics and artists, creating a multimedia performance exploring 'promise' through a series of topics, including vegetative and minimally conscious states. The performance included extracts of the filmed interviews from the healthtalk.org resource (selected and worked on by Julie Latchem) and was screened at Goldsmiths University's 'Futures in Question' conference 2014. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2014 |
| Impact | Attendees reported that the combination of audio, visual and live performance helped them to think and connect in new ways and plan to develop future art works which focus on the complexities and questions raised by PVS and MCS. The film has been used to generate further funding for the development of this collaboration and the performance piece. |
| Title | Film: Cardiff University Innovation Award |
| Description | Cardiff University Innovation Award |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2015 |
| Impact | 1,157 views to date, 92 'thumbs up', Multiple responses have been added e.g From family members: 'This is a fantastic resource and it would have been an incredible help to me six years ago. I am blown away by how much information is provided and how clear it all is.'; ? 'thank you both for helping others to understand the pain that people like me, with a loved one in PVS, go through on a daily basis. I hope this means that in future we will all feel less alone and are better understood'; From professionals working in the field: 'A really fantastic project, which we have directed some families who have children with CDOC following a brain injury... Thank you for helping lead the way in this field.' Research participants: 'This is an remarkable resource .... We are honoured to have been asked to take part in this project, which .. become an enduring support for families who have the misfortune to find themselves suddenly drowning in similar situations in the future.?' |
| URL | https://www.youtube.com/watch?v=dFH2Tj5ekoM |
| Title | Film: Coma and Consciousness Arts intervention/Exhibition |
| Description | Film of our Coma and Consciousness Arts intervention |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2015 |
| Impact | This has been viewed by 417 people to date. |
| URL | https://www.youtube.com/watch?v=LEuplCcJGj4 |
| Title | Film: ESRC impact award showcase |
| Description | Film: ESRC impact award showcase |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2015 |
| Impact | Invaluable showcase - 391 viewers re recorded to date |
| URL | https://www.youtube.com/watch?v=8RLt3P42Fzk |
| Title | Radio Programme ('Coma Songs', October 2014) |
| Description | Programme for BBC Radio 3, using extracts from the research interviews alongside specially composed music and poetry and sound. The programme was broadcast as part of a popular and innovative Radio 3 series called 'Between the Ears'. |
| Type Of Art | Performance (Music, Dance, Drama, etc) |
| Year Produced | 2014 |
| Impact | The Radio Times magazine reviewed the programme very positively - commenting that: 'the result of this mixture of testimony, poetry, and transfixing background sound effects is one of beauty so sympathetically edited that the overall effect is entirely uplifting' (Radio Times review) (www.radiotimes.com/episode/c6gv5k/between-the-ears--between-the-ears-coma-songs) A series of tweets and email comments praised the programme as: "marvelous and moving" ; "a beautiful production"; "extraordinarily moving & beautiful. Radio at its best" and "beautiful and arresting ...It felt like a real sculpture" Listening figures and downloads of the programme suggest high engagement (e.g there were 2340 requests to listen online at the time of broadcast (simulcasts) and a further 803 requests after transmission via catch-up). Total audience is estimated as 59,000. People also used link from the Iplayer webpage for this programme to seek support/training from the online healthtalk.org module created through the ESRC funding. |
| URL | http://www.bbc.co.uk/programmes/b04l30wr |
| Title | Radio programme ('Living Wills: What would you want', August 2013) |
| Description | Radio programme - half hour documentary exploring the issue of coma and Advance Decisions [ADs] to refuse treatment to avoid being kept alive in a vegetative and/or minimally conscious state |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2013 |
| Impact | A striking impact was reported by a leading charity which provides free Advance Decision forms (Compassion in Dying). The programme generated calls to their helpline and an increase in downloads of Advance Decisions from the website. Downloads of ADs increased by 100% when the programme was first broadcast and increased by 20% when it was repeated. The Director of Compassion in Dying subsequently asked for a recording of the programme for their site identifying it as 'a really useful resource for people thinking about making an AD.' |
| URL | http://www.bbc.co.uk/programmes/b0380n5c |
| Title | Radio programme (Coma Stories, Radio Wales) (23rd June 2016) |
| Description | Radio programme weaving together stories from three of the research interviews |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2016 |
| Impact | Large Radio Wales audience |
| URL | http://www.bbc.co.uk/programmes/b07g816t |
| Title | WE/ARE/SEA Ink on Canvas, plus soundtrack |
| Description | 'WE / ARE / SEA' - large ink of canvas assemblage, alongside audio 'EYES / YOU / HOPE' (composed from interviews) - Seth Oliver (www.setholiver.co.uk) |
| Type Of Art | Artwork |
| Year Produced | 2015 |
| Impact | The artworks have formed part of a travelling exhibition - reported by attendees to promote reflection and conversation around key aspects of our research findings. The moving power of this installation is evidence in our formal evaluations (see evaluations on www.cdoc.org.uk site) |
| URL | http://cdoc.org.uk/impact/artist-collaborations/ |
| Title | Where Are You Now? Shadow puppet theatre |
| Description | Shadow Puppet performance by Play of Light theatre company - developed in collaboration with our research and using voices from our research interviews. |
| Type Of Art | Performance (Music, Dance, Drama, etc) |
| Year Produced | 2015 |
| Impact | Feedback from performances demonstrate that the theatre piece is moving and thought-provoking. Comments collected from the first full performance (at a Brain Injury conference in April 2015) include: "It gave me a much deeper respect of the position family members are in and how as a therapist I could try and support them with uncertainties" (Occupational therapist) "This show brings home the reality of the situation. It helped me with understanding that brain injury continues to affect the family of the injured patient far beyond our involvement." (Solicitor) "Very moving. My nephew suffered a catastrophic brain injury a year ago and died in intensive care a week later. At the time I felt we should have persisted. I'm not sure now." (Physiotherapist) "So much of these situations is unfathomable and ungraspable, so it is appropriate that it is told through transient light and shadow, which are ungraspable" (Psychotherapist) "The simplicity of you the storyteller in the space with hospital white all around you as the screen. You have the quality of the story's own surgeon, patiently using your skills, your non medical instruments" |
| URL | http://cdoc.org.uk/impact/artist-collaborations/ |
| Description | This project involved collecting and analysing video-recorded in-depth interviews with 22 family members of severely brain-injured patients (more than twice as many as originally planned in our grant application). The interviews (on average around 3 hours each) explored people's experiences of having a son, daughter, sibling, partner, parent or other relative in a vegetative or minimally conscious state. The new video-recorded interviews were added to an already-existing data set of audio-recorded interviews (partially funded by a Wellcome grant) making 65 family interviewees in total. We then translated this research into a multi-media, on-line, support and training resource. We also video-recorded interviews with some practitioners (a brain surgeon, a critical care consultant and two neuro-rehabilitation experts). Our findings showed: (a) the isolation and lack of information and support experienced by some families; (b) lack of clarity from some family members about their own role in decision-making and (c) a lack of awareness about the role of the patient's prior expressed wishes, values and beliefs. The research suggested a need for improvements in communication, decision-making processes and compliance with the Mental Capacity Act 2005. Our findings also highlighted some of the complex emotional and social challenges confronted by families, and the lack of accurate cultural representation of prolonged coma-like states. The on-line resource was developed to address the needs identified and to help families to contribute to decision-making about their relative, backed up by reliable medical and legal information. It was also designed to be of use to practitioners in the field. The resource is in the form of a section for the award-winning charity website healthtalk.org.uk - a site which 'provides free, reliable information about health issues, by sharing people's real-life experiences' and covers over 80 different health conditions. Our new section focuses on family experiences of vegetative and minimally conscious states. Information is presented under 39 topic headings, grouped under key themes (e.g. 'Impact on family', 'Decision-making about medical treatments' etc), Each topic page includes a summary of key issues illustrated with film clips from the interviews (250 clips in total), alongside clinical and legal information. This resource provides support for families, a tool to facilitate good clinician-family communication, and information for professional training, clinical guidelines and legal/policy discussion. The researchers launched the new resource at a conference for practitioners (see 'Engagement Activities' - 'Launch conference') and subsequently ran training events with hospital ethics committees, neuro-intensive specialists, independent mental capacity advocates, and healthcare practitioners in long-term care centres (See 'Engagement Activities'). Outputs include: six publications, i.e. the multi-media website which was the core output, and in addition a booklet for families and 4 academic publications; the project PI was co-producer on 2 half hour BBC radio programmes and we delivered 27 training sessions/talks using the resource (8 of which were invited keynotes). The resource is now widely used across the UK and there is evidence of international interest and use (web-hits have come from 28 countries in addition to the UK and we have given talks in the US and Australia). |
| Exploitation Route | In addition to being used by families of vegetative and minimally conscious patients, this resource can be (and is being) used by: (a) academic researchers developing further analysis of the issues from diverse disciplinary perspectives (see work with colleagues from philosophy, history, law etc at www.cdoc.org.uk) and (b) by health care practitioners, including those interested in particular areas of health care for vegetative and minimally conscious patients. For example, with the help of ESRC IAA funding, we are already working with an experienced physiotherapist to develop specific training for physiotherapists working with vegetative and minimally conscious patients and their families, and are planning a collaboration with neuro-psychologists: we hope to take both these projects forward in the future. We have also been approached by a care home concerned to develop better practice specifically for ethnic minority families and clinicians are also keen to develop more resources and expertise related to families' diverse religious and cultural backgrounds. This resource can also be/is being used as a training resource by/for bioethicists, hospital ethics committees, lawyers, hospital clinicians, and care staff in long-term care settings catering for these patients. We are already working with these groups (see 'Engagement Activities'), and again see a great deal of potential for the future. The material is also being used in new e-learning training for healthcare professionals This resource, and the research that underpins it, is also informing debate about law and social policy in two domains: (1) serious medical decision-making regarding VS/MCS patients (see case law and guidance developments); (2) uptake and implementation of Advance Decisions - especially through (a) synergy with the Co-investigator, Celia Kitzinger's ESRC award on Advance Decisions (ES/J022306/1) and (b) a commission from Welsh government to advise on how to increase understanding of Advance Decisions in Wales |
| Sectors | Communities and Social Services/Policy,Digital/Communication/Information Technologies (including Software),Education,Healthcare |
| URL | http://www.healthtalk.org/peoples-experiences/nerves-brain/family-experiences-vegetative-and-minimally-conscious-states/topics |
| Description | The healthtalk.org resource and the research underpinning it has been used to: (a) support family members with a relative in a vegetative or minimally conscious state; (b) inform best interests discussion between clinicians and families in intensive and long-term care settings; The resource has also helped individual family members navigate the ethics/law, approach us for help, and bring cases to court that have informed developing case law (c) provide training to health care practitioners (e.g. intensive care practitioners, neurosurgeons, neuro-rehabilitation specialists, allied health professionals, independent mental capacity advocates and care staff); (d) inform recommendations by the House of Lords Select Committee on the Mental Capacity Act 2005 and National Clinical Guidelines produced by the Royal College of Physicians; (e) support ethics committee discussions and the training of bioethicists; (f) inform debate about law and medical ethics; (g) develop policy and practice relating to uptake and implementation of Advance Decisions among both practitioners and the general public (especially through synergy with our other award on ADs, ES/J022306/1); (h) provide information to increase the accuracy of reporting about 'coma' by journalists and create new cultural creative representations of coma and the vegetative/minimally conscious state. |
| First Year Of Impact | 2013 |
| Sector | Communities and Social Services/Policy,Creative Economy,Education,Healthcare,Government, Democracy and Justice,Other |
| Impact Types | Cultural,Societal,Policy & public services |
| Description | Additional document appended to National Clinical Guidelines on prolonged disorders of consciousness |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Leaflet on the role of the family in serious medical decision-making appended to National Clinical guidelines supported improved best interests decision making for patients in prolonged disorders of consciousness |
| URL | https://www.rcplondon.ac.uk/resources/information-families-and-close-friends-people-vegetative-or-mi... |
| Description | Citation in House of Lords select committee report Mental Capacity Act 2005: post-legislative scrutiny |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| Impact | Increased implementation of the Mental Capacity Act 2005 and respect for the views of people who lack the capacity to make their own decisions |
| URL | http://www.publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/139.pdf |
| Guideline Title | Prolonged disorders of consciousness: national clinical guidelines |
| Description | Citation in National Clinical Guidelines |
| Geographic Reach | National |
| Policy Influence Type | Citation in clinical guidelines |
| Impact | Impact on how healthcare professionals assess, diagnose and treat patients in vegetative or minimally conscious states |
| URL | https://www.rcplondon.ac.uk/resources/prolonged-disorders-consciousness-national-clinical-guidelines |
| Description | Citation in POST (April 2015) |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| URL | http://www.parliament.uk/business/publications/research/briefing-papers/POST-PN-489/vegetative-and-m... |
| Description | Being Human Festival |
| Amount | £1,000 (GBP) |
| Organisation | Arts & Humanities Research Council (AHRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2016 |
| End | 12/2016 |
| Description | ESRC Festival of Social Sciences |
| Amount | £1,000 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2016 |
| End | 12/2016 |
| Description | ESRC IAA |
| Amount | £18,000 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2018 |
| End | 08/2018 |
| Description | GW4 Acceleration (Dying well with reduced capacity network) |
| Amount | £74,881 (GBP) |
| Funding ID | GW4-AF2-001 |
| Organisation | GW4 |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 06/2015 |
| End | 06/2016 |
| Description | ISSF Engagement Award (Exhibitons and panel discussion on consciousness - Abacus/HaydenEllis) |
| Amount | £3,412 (GBP) |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 06/2015 |
| End | 09/2015 |
| Description | Impact Acceleration Award (ESRC, Cardiff) (AHP resource project) |
| Amount | £19,100 (GBP) |
| Organisation | Cardiff University |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 07/2015 |
| End | 06/2016 |
| Description | Impact Acceleration Award (ESRC, Cardiff) (Secondment, Mental Capacity advocate) |
| Amount | £17,445 (GBP) |
| Organisation | Cardiff University |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 03/2016 |
| End | 08/2016 |
| Description | Seed Funding (to translate research into art collaborations - shadow puppets+ canvases) |
| Amount | £5,000 (GBP) |
| Organisation | Cardiff University |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 05/2014 |
| End | 05/2015 |
| Description | Wellcome Impact Award - to hold and film Launch Event |
| Amount | £8,000 (GBP) |
| Organisation | Wellcome Trust |
| Department | Wellcome Trust Institutional Strategic Support Fund |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2013 |
| End | 03/2015 |
| Title | Interviews for healthtalk.org resource |
| Description | Interviews (filmed) |
| Type Of Material | Database/Collection of data |
| Year Produced | 2013 |
| Provided To Others? | Yes |
| Impact | Multiple co-authored publications (see cdoc.org.uk), which in turn have informed public debate and professional practice. |
| Description | The Art of Caring: art exhibition with designs from our work with Karin Jashapara on her shadow puppetry theatre: 'Where are you now?' 24th May 2016 The Rose Theatre, Kingston, KT1 1HL http://www.artofcaring.org.uk/ |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | 24th May 2016 The Art of Caring: An art exhibition exploring the art of caring from many viewpoints, includes designs from our work with Karin Jashapara on her shadow puppetry theatre: 'Where are you now?' The Rose Theatre, Kingston, KT1 1HL |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.artofcaring.org.uk/ |
| Description | "Consciousness and coma: an exploration through art and science" (June 2015) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | We hosted a lively event at the Abacus centre in Cardiff - an exhibition of art about coma, a debate about consciousness and our shadow puppet performance from 'Playoflight' theatre, exploring family reflections about the experience of having a relative in a long term coma. See a short youtube about the exhibition |
| Year(s) Of Engagement Activity | 2015 |
| Description | 'Advance Decisions: why families of VS/MCS patients so often wish their relative had one' Compassion in Dying AGM, London Conway hall (30th June) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Lecture - 'Advance Decisions: why families of VS/MCS patients so often wish their relative had one' at Compassion in Dying AGM, London Conway hall (30th June) |
| Year(s) Of Engagement Activity | 2016 |
| Description | 'Beyond the Hype in the Delivery of Future Medicines' - the case of fmri (18th June, Mason Institute) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | sparked questions and discussion Discussion |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.youtube.com/watch?v=_zF9rs49Iic |
| Description | 'Challenges for Allied Health Professionals: Introducing a new e-learning resource' International Conference on the recent advances in the assessment, diagnosis and multidisciplinary management of people with Disorders of Consciousness (DOC) Holy Cross Hospital, Hampshire. (Training) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | training/lecture at International conference focussed on care of people in a disorder of consciousness. |
| Year(s) Of Engagement Activity | 2016 |
| Description | 'Rehabilitation and Prolonged Disorders of Consciousness' - Huntercombe Group and Case Management Services, 17 March 2016 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Training of Health Care Professionals - Mental capacity act, medical decision making, family experiences. |
| Year(s) Of Engagement Activity | 2016 |
| Description | 'The role of Occupational Therapists in PDoC' - The final workshop group of Occupation Therapists (Pilot) - training in vegetative and minimally conscious states. Cardiff. 22nd June 2016 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Undergraduate students |
| Results and Impact | Workshop training to Allied Health Professionals, AHP roles - diagnosis and prognosis of VS/MCS, core skills for AHPs, Communication skills, Best Interests, ethics and law. Health Sciences, Cardiff University |
| Year(s) Of Engagement Activity | 2016 |
| Description | 'Where Are You Now?' - theatre developed out of ESRC funded research - performed as part of the Being Human Festival in Cardiff at Brickstock (Nov 17th). |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | 'Where Are You Now?' - theatre developed out of ESRC funded research - was performed part of a conference (the 16th) and then part of the Being Human Festival (17th) in Cardiff at Brickstock. |
| Year(s) Of Engagement Activity | 2016 |
| Description | 28th Nov and 1st Dec 2016 We were given permission to live tweet from a court case concerning Paul Briggs - considering continuation/withdrawal of ltreatment. The first time, as far as we know, that researchers have tweeted from a Court of Protection hearing about life-prolonging treatment. We tweeted from @cdocuk and our personal accounts (@KitzingerCelia & @JennyKitzinger) using #COPBriggs. |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 28th Nov and 1st Dec 2016 We were given permission to live tweet from a court case concerning Paul Briggs - considering continuation/withdrawal of ltreatment. The first time, as far as we know, that researchers have tweeted from a Court of Protection hearing about life-prolonging treatment. We tweeted from @cdocuk and our personal accounts (@KitzingerCelia & @JennyKitzinner) using #COPBriggs. |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://storify.com/KitzingerCelia/paul-briggs-treatment-withdrawal-case |
| Description | ANH withdrawal MSc Neurorehabilitaion Cardiff University |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Using family interview data and twitter court case outputs - afternoon teaching of Physiotherapists and Occupational Therapists to explore values, beliefs and practice experiences of the withdrawal of clinical artificial nutrition and hydration. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Advance Decision Panel at Before I Die Festival - York (16 May 2014) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Seventy-five people attended this event (10 of whom registered for CPD points with the SRA). Speakers were: Verena Hewat (End of Life Rights Project Coordinator, Compassion in Dying), Robert Cole (Head of Clinical Practice, West Midlands Ambulance Service NHS Foundation Trust); David Worth (retired Consultant Physician, York Hospital); Paul Murphy (National Clinical Lead for Organ Donation); Penney Lewis (Centre of Medical Law and Ethics, Kings College London), Celia Kitzinger (PI, ESRC Advance Decisions Seminar), Jenny Kitzinger (Co-Director, York-Cardiff Chronic Disorders or Consciousness Research Centre), Sue Wilkinson (Loughborough University researcher with Compassion in Dying Helpline). The discussion continued for 45 mins in the lecture theatre and for another hour over drinks afterwards. Several people signed up for the Advance Decision Clinic scheduled for the following day. Evaluation of all Before I Die Festival activities was carried out by a Festival administrator and showed significant knowledge gain amongst the audience at this event. On a 5 point scale where 5 = well informed and 1 = not informed at all: Before today, how informed were you about issues relating to the topic of this event? 2.54 After todays event how informed are you about issues relating to the topic of this event?; 4.52 Average knowledge gain of nearly 2 points (1.98) on a 5 point scale. For many people the knowledge gained was personally empowering: "I am now in a better position to write an AD" "I will make an advance decision and encourage my family members to do so also" "I will consider making an advance decision so my sisters know exactly what I want" The use (in Jenny Kitzinger's talk) of healthtalk.org video-clips from our ESRC-funded project on Family Experiences of the Vegetative and Minimally Conscious States was particularly commended: 'I found the use of video clips incredibly powerful for conveying the real experiences of people facing these issues thereby giving great importance to the need to make advance decision (which has previously felt very hypothetical and not really relevant to me).' 'Especially enjoyed Jenny's presentation as her videos made the subject 'human' and real by showing us real people who have loved ones in a coma.' The impact here demonstrates a productive synergy between activities associated with the two different ESRC awards in which the PIs of both are involved. The event was most proximally an outcome of the award on which Celia Kitzinger is PI (ES/J022306/1 and of which Jenny Kitzinger is fully participating member). The success of the event was clearly in part an outcome of the award which enabled the creation of the video-clips in which families describe their experience of PVS/MCS - an award on which Jenny Kitzinger is PI and Celia Kitzinger a Co-I (ES/K00560X/1). Members of the public said that they would write ADs and many made appointments (via the AD Clinic) for one-on-one meetings with members of the panel for help and information about doing this. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.beforeidiefestival.co.uk/listevents/page/4/ |
| Description | Art exhibition - visual images of the vegetative state and family experiences at 'Brickstock' - Being Human Festival 16th/17th Nov |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | 16th and 17th Nov 2016 our co-produced art exhibition presenting new visual images of the vegetative state and family experiences was on display at 'Brickstock' as part of the Being Human Festival |
| Year(s) Of Engagement Activity | 2016 |
| Description | Arts event about coma and consciousness (21st-22nd June Cardiff) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Formal evaluation showed increase in knowledge, empathy, understanding and reflection. "gave insight into differing experiences" "Greater understanding of families going through the process" "Gave me the opportunity to look at the real experiences" "Very thought provoking. It makes you think and ask difficult questions". "I am going to create a document outlining my beliefs and wishes." "I've learned so much that I can take to my own life and about my own family" "I haven't stopped thinking about it. ...Listening to the voices on the loop with the art - it was beyond empathy what it made me feel" "I'd like the staff on the unit to watch that so we can have a discussion about it and if the families would like to see that as well in terms of them... supporting each other and us working as a team" Staff from a care home who attended the event reported back the positive effects to their manager, resulting in invitation to take the exhibition into the care home Staff reported on-going reflective discussion |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://cdoc.org.uk/public-dialogue/ |
| Description | Cathy Rezenbrink - Cardiff boktalk - ESRC being human |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | 16th and 17th Nov 2016 we co-hosted public events with Cathy Rentzenbrink to discuss her memoir about her brother's catastrophic brain injury, and eventual death after on of the early UK court cases for treatment withdrawal. This was a collaboration with 'Cardiff BookTalk' and with the Being Human Festival |
| Year(s) Of Engagement Activity | 2016 |
| Description | Clinical Ethics Committee, Coventry and Warwickshire NHS Trust (9 Nov 2012) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Health professionals |
| Results and Impact | Lots of interest and discussion Led to consultation about best interests documentation in Coventry and Warwickshire NHS Trust - provided advice and feedback on draft forms. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Co-producing multimedia learning resources through interprofessional education: the PDoC way |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Conference presentation to clinical educators, healthcare lecturers and managers |
| Year(s) Of Engagement Activity | 2017 |
| Description | Co-producing multimedia learning resources through interprofessional education: the PDoC way - poster |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster at Physiotherapy UK about new online resource and research led interprofessional teaching for allied health professionals |
| Year(s) Of Engagement Activity | 2017 |
| Description | Coma poetry reading and concert 12th Nov 2016 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | 12th Nov 2016 - We co-hosted a poetry reading and concert - with sonnets and the inaugural performances of music specially composed to reflect new 'coma' research as part of the ESRC Festival of Social Sciences |
| Year(s) Of Engagement Activity | 2016 |
| Description | Coma, consciousness and decision-making (Two day CDoC event, Badby Park 5-6th Nov 2016) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | 65 people came to a series of events over two day event (5th-6th November 2015) - the 'Coma and Disorders of Consciousness' Art Exhibition and talks and debate at Badby Park centre, Daventry. These events included Art and theatre, and Julie Latchem presenting her research into physiotherapy and her care home ethnographies and Jenny Kitzinger and Celia Kitzinger presenting the 'healthtalk.org.uk resource bout vegetative and minimally conscious states and discussed the Mental Capacity Act |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://cdoc.org.uk/publications/summaries-and-commentary |
| Description | Conference (Joint with CoPPA) (Family experiences of treatment withdrawal: developing a healthtalk.org resource) (9 May 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | 82 people (mainly legal professionals and members of the Court of Protection Association [CoPPA]) attended this day long event organised by Celia Kitzinger at the University of York (jointly with COPPA). The event included our talk on 'Family experiences of treatment withdrawal: Developing a healthtalk.org resource' and dialogue with key professionals (e.g. Judge Justice Baker). The event generated intense debate and dialogue about recent legal rulings and decision-making about the withdrawal of life-prolonging treatment. The event as a whole impacted on knowledge: on entry to the conference the delegates' (self-assessed) average knowledge level about the topic was 2.85 on a five-point scale (where 5 was 'very knowledgeable'). Their average exit score was 4.15. Respondents highlighted that they had gained: 'Improved understanding of the role of the patient's family'; 'Enjoyed learning about insights into perspectives of families and healthcare workers'; 'Wider discussion of family/carer experience'; They reported changes such as: 'Better prepared when representing the family'; 'referring clients/families to available resources'; 'raises awareness to be open with families re future decisions even if they don't need to make them in the here and now'; 'Reassured re. discussion on withdrawing CANH (i.e. having that conversation). I have a case where people are reluctant to have that conversation even though I know it's PVS.' 'Both in this discrete area and in my practice as a family lawyer I will be more alert to the importance of the insights of non-legal professionals'; 'Significantly has inspired me to try and work with CDoC to promote improvements in PVS treatment and court process in Wales'. (Gavin Knox, Solicitor). Members of the Official Solicitor's office reported that they had learned a great deal from the event and said that they had been impressed by 'overall understanding with a joined-up approach' (Brid Breathnach, Official Solicitor's Office) and that they had learned from 'discussion of family/carer experience, depth of thought. Excellent course. Would very much want to come to more' (Sophia Roper, Official Solicitor's Office). After this event we had on-going discussions with participants about improving policy and practice across different parts of England and Wales. Legal colleagues have used our resources to support the families they are working with. We have also been invited to contribute to a series of subsequent events (e.g. give keynotes and training) to expand learning based on our research e.g a legal firm emailed: "We have been incredibly impressed by the on-line resource created to highlight the many and varied issues faced by relatives who can have to make the most important decisions imaginable on behalf of loved ones. It is for that reason that we would like you to partner us on what we see as a very relevant event aimed predominantly at local clinicians'. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://coppagroup.wix.com/coppa#!seminars/galleryPage |
| Description | Conference launch + Lecture introducing healthtalk.org module on vegetative and MCS (17 Sept 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of new resource Over 100 people attended - learned about resource, and took it back to their colleagues and the families/patients with whom they work |
| Year(s) Of Engagement Activity | 2014 |
| Description | Conference, Launch for healthtalk.org module on vegetative and MCS (17 Sept 2014) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Type Of Presentation | keynote/invited speaker |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A total of 110 people, mainly health care practitioners, but also a wide range of others such as legal practitioners, attended this launch and were introduced to the online resource we created, listened to panel presentations from leading experts in the field and networked and debated the issues raised. The formal evaluation via feedback sheets demonstrated that the event: (a) increased knowledge and capacity in the area of the treatment of vegetative and minimally conscious patients (e.g. in relation to understanding family perspectives, but also in relation to the law); (b) provided support for families and a basis for improved communication with practitioners (c) inspired those present to act as ambassadors for the new online resource in their own professional networks (e.g. legal/medical) and in a wide range of settings (e.g. hospital and long-term care centres). Examples of written comments in response to questions about what they had found useful/learnt included: 'Thank you. The most motivating and inspiring project I have seen for a long time. Congratulations. Will disseminate it widely among the neuro team I work in'; 'Finding out about this amazing resource and realizing how useful it will be in the training I deliver'; 'Clarify Mental Capacity Act, will digest the three helpful leaflets and let other clinicians know re this useful website'; 'will give info to my colleagues and Commissioners in CCGs'; 'The resource will be a valuable contribution to the support and information available to our patients' relatives and friends. We will be signposting them to it.'; 'The resource will enable me to suggest the patients' families watch the videos and provide a platform on which to explore their thoughts'. We were subsequently asked by attendees to run additional sessions in their local regions to help train a wide variety of professionals on the basis of our research findings and the health talk module e.g training Independent Mental Capacity Advocates health service delivery staff across the UK. We have also received invitations to present the healthtalk.org resource internationally (USA and Australia). |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://cdoc.org.uk/funded-projects/healthtalk-org/ |
| Description | Death Dying Disposal Conference talk (5-8 Sept 2013) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Questions and discussion followed. n/a |
| Year(s) Of Engagement Activity | 2013 |
| Description | Developing a multimedia learning resource for Allied Health Professionals: exploring challenges of prolonged disorders of consciousness. European Physiotherapy Congress. Liverpool, UK. 11-12 November 2016 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of AHP-PDoC family relations and multimedia resource development for education at European Physiotherapy Conference |
| Year(s) Of Engagement Activity | 2016 |
| Description | Evidence to House of Lords Select Committee on the Mental Capacity Act 2005 (13 March 2014) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Informed the House of Lord's select committee report Informed the report and subsequent response from Government. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Inside the ethics committee Radio 4 programme 8th August 2016 |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | 8th August 2016 - BBC Radio 4, "Inside the Ethics Committee": Celia Kitzinger, Tor Butler Cole and Lynne Turner Stokes discussed the ethics of artificial nutrition and hydration for a patient in a permanent vegetative state. Listen to the programme: http://www.bbc.co.uk/programmes/b007xbtd |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.bbc.co.uk/programmes/b007xbtd |
| Description | Invited Address - Showcasing the health talk online resource The Mental Capacity Act 2005: Annual Review (16 Oct 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | CK gave a 30 minute presentation about healthtalk.org focusing on families' interactions with the law and (in particular) the Court of Protection. It provoked a lot of interest and very positive feedback from Mr Justice Baker, the Court of Protection judge who did the final summing up and reflections on the day's talks. Several legal practitioners said that they were newly aware of the importance of understanding the families' point of view in relation to Court of Protection cases for a relative. Many said that they would refer family members in future to our healthtalk.org resource for help and support. An in-house lawyer working with a major disability charity who attended the talk has subsequently contacted me with an interest in collaborative work. |
| Year(s) Of Engagement Activity | 2014 |
| URL | https://www.langleys.com/publications/2013-publication-crosslinking/national-experts-gather-in-york-... |
| Description | Keynote lecture (Health and Care Research Wales Conference 2016) (October) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | 'Interdisciplinary social science research: dialogue with policy-makers, practitioners and "real people" (Health and Care Research Wales Conference 2016 Research With Impact, 13 October 2016, SSE SWALEC Stadium, Cardiff (Keynote) |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://www.healthandcareresearch.gov.wales/research-with-impact/ |
| Description | Lecture (MDT conference, Liphook, Hampshire, Holy Cross, Physiotherapy for people in DoC: family perceptions) (12-13 June 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Health professionals |
| Results and Impact | This talk, presented by Julie Latchem (an experienced physiotherapist) sparked questions and discussion, as well as reflection on individual attendees' clinical practice after the session leading to further one-to-one discussion. Immediate reflection on relations in clinical practice. The presentation also won the conference award for best parallel session. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.holycross.org.uk/conference.html |
| Description | Lecture (17/3/2016, Huntercombe, Leeds) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Introduced the healthtalk.org module to the audience - demonstrated how they could use it for professional training, and offer it as support for families. Also explored legal issues - which educated audience about aspects some had previously not understood. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Lecture (22/2/2016, Double-act on neuroscience and consciousness Cardiff University) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Undergraduate students |
| Results and Impact | Around 40 UG science/medical students attended this Double-act on neuroscience and consciousness - discussing science, PR, ethics and responsibility at Cardiff University |
| Year(s) Of Engagement Activity | 2016 |
| Description | Lecture (Acquired Brain Injury Training Day, Cumbria Partnership, CK) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Introducing the healthtalk.org resource of prolonged disorders of consciousness 'Acquired Brain Injury Training Day' Cumbria Partnership NHS FT (+ North Lancashire Team) Sedbergh Health Centre |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture (Australian Centre for Health Law Research, Brisbane, 'Developing an online resource on law, value and ethics') (25 Nov 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Talk stimulated extensive discussion of how to translate academic work into public engagement and impact for stakeholders. Audience became interested in contributing to a festival in Brisbane to translate research about end-of-life into public engagement and policy impact activities |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture (Bioethics committee, St Vincent's hospital, Sydney) (11 Nov 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk prompted discussion among diverse members of the committee (about 18 legal and clinical experts and ethicists) about treatment decisions and ways of avoiding futile and burdensome treatment for severely brain injured patients. Discussion also explored differences between UK and Australia (e.g. in relation to law re decision-making) After my talk individual members of committee discussed writing their own Advance Decisions to avoid what they would consider to be burdensome treatment and discussed possible uses of the healthtalk.org module for discussion with families considering different treatment decisions. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture (Centre for Values, Ethics and Law in Medicine, Sydney, Australia) (13 Nov 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | About 20 people, mainly academics, attended this talk, some with roles on (for example) hospital ethics committees. Talk sparked discussion about Advance Decisions, disability rights debates, research ethics etc. Attendees expressed interest in using the resource in teaching and in ethics discussions (theoretical and practical) and also talked about using the resource to inform their own personal thinking about end-of-life issues for themselves and their families. Talk given day of deadline for this report, so results not yet known - but early indications are that some attendees will use the resource for personal or teaching purposes, and one attendee was clear that she felt it would be a useful resource for the ethics committee on which she sits and forwarded the link to colleagues on the committee there and then. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture (CoPPA conference, Manchester, 'Autonomy and treatment decisions') (19 Sept 2013) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Legal practitioners interested in collaborating with our research and using the resource we would produce in their work After the talk legal practitioners asked to collaborate and to be informed once the www.healthtalk.org resource became available. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Lecture (Concord Hospital, Sydney, Australia) (13 Nov 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Health professionals |
| Results and Impact | About 30 health professionals attended this talk (intensive care specialists, neurosurgeons, consultant renal medicine etc.). Their questions/comments indicated they recognised many of the dilemmas identified by our research and found the health talk.org website enlightening and useful in thinking about ways to address some very intractable problems. The point was made by a renal specialist that skills in discussing futility/burden (with patients or families) were very much needed for all specialisms now (e.g. renal medicine, paediatrics) and he believed that our healthtalk resource about vegetative/minimally conscious states could be an invaluable resource across a much wider audience than originally intended and could be the basis for more generic training materials. This point generated general agreement from colleagues and several said they would use the resource in best interest meetings with diverse patients/families (e.g. the page on 'Resuscitation and DNR'). Talk given day on morning of submitting this report so not yet able to report on long-term impacts, but comments immediately after the talk already indicate desire for access to further materials and enthusiasm for using the resource in training, best interests discussions and ethics meetings. Attendees also volunteered that they would be passing on information about the resource to colleagues e.g. 'I am going to alert my students to this site'; 'Our ethics committee needs to see this' etc. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture (Glenside conference, 'Serious medical treatment decisions and best interests') (3 July 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Health professionals |
| Results and Impact | Presentation was part of a conference on "Caring for those who cannot decide: Clinical, safeguarding and legal aspects of neuro-rehabilitation for those who lack capacity". (Glenside conference) The presentation by JK to around 100 practitioners prompted a shift in understanding of 'best interests' among some participants and generated a great deal of discussion Attendees expressed interest in using the health talk.org module on the vegetative and minimally conscious state in their own learning and for training. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://cdoc.org.uk/news14/ |
| Description | Lecture (Gold Cost Hospital, Brisbane) (24 Nov 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk to about 120 people (60 people in room with speaker- with live webcast to an equivalent audience at another hospital). The audience in the room included CEO of the hospital, the director of intensive care, and head of pastoral care etc and a range of clinicians, allied health professionals etc. Discussion after the talk included ways of improvising best interests discussion and possibilities of the hospital supporting staff to write Advance Directives. Staff subsequently contacted us for information to distribute to colleagues and the CEO of Gold coast hospital wrote to say they were now looking at plans to engage staff in their own end-of-life planning. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture (MDT conference, Liphook, Hampshire) (Introducing the healthtalk.org module) (12-13 June 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Up to about 100 professionals attended and the presentation prompted questions and discussion Follow up included requests to present to professional teams in neuro-rehabilitation and professionals engaging with the health talk.org resource and passing on information to families. Repeat requests still coming in for information booklets which were showcased at the conference. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.neuro-reha.com/wp-content/uploads/2014/01/2014-recent-advances-DOC.pdf |
| Description | Lecture (Minster Law/CDoC conference, York) (23 April 2015) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Health professionals |
| Results and Impact | Talk sparked questions and discussion about family perspectives. Delegates reported increased understanding of family perspectives |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://cdoc.org.uk/news-2015/ |
| Description | Lecture (Nursing, UCSF, San Francisco, USA, Advance Directives and end-of-life wishes) (30 Oct 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Five people attended the talk, and lengthy dialogue about the UK versus the US system of decision-making and the role of the family ensued. An intensive care nurse at a leading neurology centre in San Francisco asked for several copies of the poster about the healthtalk.org resource to take to her colleagues and to families. Ideas for future collaborations were discussed. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture (Princess Alexandra Hospital, Brisbane) (27 Nov 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Health professionals |
| Results and Impact | Extensive discussion resulted around ethical, clinical and legal issues with audience present in room (around 60), the event was also live broadcast to an equivalent audience in a sister hospital and recorded for further use in training This was part of a regular 'Ethics Forum' run at the hospitals Staff kept in contact with the presenter and requested further information. A social worker discussed a potential PhD she might wish to pursue |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture (Royal Hospital for Neurodisability, International Brain Injury Symposium) (CDoC Family Perspectives) (27 March 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Health professionals |
| Results and Impact | Talk stimulated questions and discussion about family perspective, promoted the new guidelines on the management of patients in prolonged disorders of consciousness and requests for follow-up information and interest in the healthtalk.org resource. After the talk there were repeat request for further information and attendees reported it had increased their understanding of family perspectives and how to improve communication. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.rhn.org.uk/events/conferences-and-seminars/interntl-bi-symposium.htm |
| Description | Lecture (Science Fiction, Glasgow University, 27 November 2015) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Wellcome funded seminar series on 'Science Fiction and the Medical Humanities'. Jenny Kitzinger talked on "Science Fiction, ethics and the body: clones, coma patients and organ harvesting" (Wolfson Medical School, Glasgow University, 27 November 2015) |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture on ANH (12 November 2015 - National IMCA Conference) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dissemination and debate. We ran a session on best interests and providing/withholding/withdrawing life-sustaining treatment at this conference (Smart Aston Court Hotel, Derby DE1 2SL) 12 November 2015 - National IMCA Conference |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture, National Rehabilitation Hospital, Dublin. 22 Jan. 2015 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Health professionals |
| Results and Impact | Talk opened up a debate about decision-making in relation to treatment. Participants indicated they they had previously not discussed these issues openly and valued the catalyst of the presentation which helped their reflection and prompted open conversation about the issues raised. Opening up a debate about best interests and life-sustaining treatment that had previously been silenced |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture/Grand Round (Princess Alexandra Hospital, Brisbane) (27 Nov 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | To be completed |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture/consultation - Physiotherapy presentation and consultation (4/8/2015, Julie Latchem) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | 35 physiotherapists attended a talk and engaged in debate surrounding the care of people in disorders of consciousness and family experiences of therapeutic practices. The presentation followed a period of consultation regarding the development of a multimedia resource for AHPs. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture/consultation: Multidisciplinary team presentation and debate (15/6/15 Julie Latchem) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | An entire multidisciplinary therapy team at Rookwood Hospital, Cardiff attended a talk and engaged in discussion about the care and treatment of people in disorders of consciousness and family experiences of the AHP interventions given to their relatives. The talk followed a consultation regarding the current research. Professionals engaged in both topical discussion about PDoC care, but also contributed extensively by explaining their own learning needs and that of non-specialist therapists. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Masters level teaching for Physiotherapists and Occupational Therapists |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 2 Hour teaching workshop for Advance Practitioner Masters students at Cardiff University's School of Health Care Sciences. Students comprised on International Physiotherapy and Occupational Therapy Practitioners. The Workshop was built on the experiences of families of people in a disorder of consciousness and medical decision making using research findings from the work conducted by CDoC, the subsequent HTO resource and the new data collected as part of a new in development Allied Health Professional standalone multimedia resource. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Panel (San Diego, ASBH conference, Using Applied Arts to Improve End-of-Life Care) (17 Oct 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Using Applied Arts to Improve End-of-Life Care About 60 medical practitioners involved in ethics consultations and academic bioethicists attended this panel and learnt about the healthtalk.org initiative and other ways of using applied arts to improve end-of-life care |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.asbh.org/meetings/annual/annualmeeting.html |
| Description | Radio interview - BBC Radio 5 Live - with Phil Williams (3 Feb. 2015) |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Participation in radio programme about serious brain injury and rehabilitation raised the question of 'what if no rehabilitation is possible and the patient is in a permanent vegetative state?'. Unsure as yet what notable impacts if any from this activity |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.bbc.co.uk/programmes/b01sfcv7 |
| Description | Royal Society of Medicine Critical Care Section Conference (29 Nov 2013) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Health professionals |
| Results and Impact | This was an invited presentation to talk about previously published research. Presented by CK, we used the opportunity to draw on more recent interview data collected as part of the healthtalk.org research to illustrate and develop these findings. The talk created a lot of interest in the new resource and generated conversation about the ethics of critical care which continued over the lunch and tea breaks and led to several follow-up discussions with practitioners. Practitioner reported understanding better some of the difficulties they experience in communicating to relatives of patients in critical care. There was interest in developing some collaborative research in the future. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Stopping life prolongng treatment |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Sept 2016 Our case study of delay in stopping life-prolonging treatment published in Journal of Medical Ethics: goo.gl/5Y5SSw National coverage of this case including on Radio 4 The Today programme and BBC2's Victoria Derbyshire show |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://goo.gl/5Y5SSw |
| Description | Sue Ryder Care Centre Nottingham Talk (31 Jan 2013) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Health professionals |
| Results and Impact | Questions and discussion about ADs and ACP more generally, specifically in relation to long-term 'coma' One member of the audience, a peer educator about death and dying, volunteered for our healthtalk.org project (our other ESRC-funded research) as a result of hearing the talk. His wife had been in a vegetative state - he had not previously discussed this in depth in relation to ADs. |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://www.nottingham.ac.uk/research/groups/srcc/documents/flyers/srcc-seminar-flyer-31-january-2013... |
| Description | Talk to Speech and Language Therapists (17/6/15, Julie Latchem) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | 30 speech and language trainees attended an hour's lecture on the vegetative and minimally conscious state and their role as professionals. The audience were intensely engaged and asked questions. They also agree to be recorded so the session could be used in on-line learning materials in future |
| Year(s) Of Engagement Activity | 2015 |
| Description | Talk to Speech and Language Therapists (25/11/2015, Jenny Kitzinger) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | 30 speech and language trainees attended an hour's lecture on the vegetative and minimally conscious state and their role as professionals. The audience were intensely engaged and asked questions. They also agree to be recorded so the session could be used in on-line learning materials in furture |
| Year(s) Of Engagement Activity | 2016 |
| Description | Training (St George's neuro-intensivists, 'Introducing the healthtalk.org module - reflections for intensive care') (24 Sept 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Health professionals |
| Results and Impact | Celia Kitzinger and Jenny Kitzinger led a training discussion with neuro-intensive care practitioners, using our new online resource at www.healthtalk.org/peoples-experiences/nerves-brain. Neuro-intensivists had the opportunity to reflect on the process of life/death decision making and communication with families, and the consequences of their decisions. One intensive care specialist informed us he had used the resource to help inform decisions and referred families to it to help communication. New research collaborations were formed. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://cdoc.org.uk/news14/ |
| Description | Training for IMCAs, Irwin Mitchell London (10 Oct 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | This training (by Celia Kitzinger) focussed on serious medical decision-making for people in PVS/MCS and showcased the healthtalk.org website (funded ESRC award ES/K00560X/1). This served to increase knowledge and capacity in the area of treatment of vegetative and minimally conscious patients and support for their families, and enabled those present to act as ambassadors for the new online resource in their own advocacy organisations. There was a particular interest in how Advance Decisions would help improve decision-making for PVS/MCS patients. At their request we subsequently worked with 7 advocates who were part of the audience to provide information and support for them in writing their own Advance Decisions (thereby drawing on expertise developed as part of ESRC grant [ES/J022306/1]). These advocates have since promoted ADs within their own organisations with both staff and clients. Most had known about ADs before the session but nobody present had actually done one. Their decision to complete and promote ADs was strongly influenced by this talk about families' experiences of PVS/MCS. The impact here demonstrates a productive synergy between activities associated with two different awards in which the PIs of both are involved (Celia Kitzinger is PI on ES/J022306/1 and Co-I on ES/K00560X/1; Jenny Kitzinger is PI on ES/K00560X/1 and a fully-participating member of the seminar series funded by ES/J022306/1.) |
| Year(s) Of Engagement Activity | 2014 |
| Description | Training for IMCAs, Irwin Mitchell Manchester (30 Sept 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | I showed healthtalk.org to a group of advocates and talked about the issues that arise in relation to advocacy for PVS and MCS patients. (Also in terms of capacity-building - I involved a family member of a PVS patient in co-presenting this work.) A senior independent mental capacity advocate attended this training specifically because she was responsible for working, for the first time, with a minimally conscious patient who she was going to meet the next day. She asked lots of questions, took away lots of resources, and emailed me subsequently afterwards: 'Thank you for your email, the meeting went well and your session raising issues for patients in this area really helped. I gave the information to the ward you gave us on that day.' |
| Year(s) Of Engagement Activity | 2014 |
| Description | Training for IMCAs, Irwin Mitchell Newcastle (24 Oct 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | As part of this training (by Celia Kitzinger) we showed advocates our new healthtalk.org resource in order to increase knowledge and capacity in relation to the treatment of vegetative and minimally conscious patients and their families. In collaboration with an advocacy organisation, Empowerment Matters, and at their request, CK also presented a short talk about Advance Decisions to Refuse Treatment and their value in circumventing some of the difficulties that had arisen for the patients and families featured in our healthtalk.org resource. Eight advocates signed up to receive more information and training in this area. The impact here demonstrates a productive synergy between activities associated with two different awards in which the PIs of both are involved (Celia Kitzinger is PI on ES/J022306/1 and Co-I on ES/K00560X/1; Jenny Kitzinger is PI on ES/K00560X/1 and a fully-participating member of the seminar series funded by ES/J022306/1.) After this training session we were asked to organise training for advocates on how to assist members of the public who want to write Advance Decisions to Refuse Treatment. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Undergraduate AHP Interprofessional Teaching - Cardiff School of Healthcare Sciences - 23 Jan 2017 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Undergraduate students |
| Results and Impact | Workshop training to Allied Health Professionals (Occupational Therapists and Therapeutic Radiographers), AHP roles - diagnosis and prognosis of VS/MCS, core skills for AHPs, Communication skills, Best Interests, ethics and law. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Undergraduate AHP Interprofessional Teaching - Cardiff School of Healthcare Sciences - 26 Sept 2016 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Undergraduate students |
| Results and Impact | Workshop training to Undergraduate Allied Health Professionals, AHP roles - diagnosis and prognosis of VS/MCS, core skills for AHPs, Communication skills, Best Interests, ethics and law. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Undergraduate AHP Interprofessional Teaching - Cardiff School of Healthcare Sciences - January 4th 2017 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Undergraduate students |
| Results and Impact | Workshop training to Allied Health Professionals (Diagnostic Radiographers and Operating Department Practitioners), AHP roles - diagnosis and prognosis of VS/MCS, core skills for AHPs, Communication skills, Best Interests, ethics and law. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Website production ('Family experiences of vegetative and minimally conscious states') |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | Yes |
| Geographic Reach | International |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | The website (although only launched on 17th September) has generated huge interest. At the time of writing (less than two months post launch) the site has had 1,725 unique visitors from 29 different countries, with 10,800 pages of different pages of the site, and we have many invitations to give presentations about the resource all over the UK and internationally (see 'Launch conference'). Headway, the main brain injury charity in the UK have asked to use film from the site, stating that the new resource: 'fills an important gap in current provision and will have a key impact in improving the lives of vegetative and minimally conscious patients and their families'. The Chair of the Royal College of Physicians Guidelines Development Group (Professor Lynne Turner-Stokes) commented that 'The resource is brilliant - a really useful resource for our patients' families and for the clinical staff. It's an invaluable complement to the National Clinical Guidelines that will help health care professionals to deliver the guidelines in practice'; and Professor Derick Wade (a leading neuro-rehab consultant, Oxford Centre for Enablement) stated that: "It is an excellent website and should be THE resource for Health Care professionals, including managers and commissioners, because it covers all aspects and presents most of the possible points of view. It is well laid out and can be read, listened to and looked at in small bits easily." Practitioners report that the resource has improved their own understanding and their ability to work with families: 'a fantastic resource for training our staff - especially for staff who are new to the organization - to expose them to what the families may be thinking and to their needs, and what to say and what not to say.' (Sophie Duport, Royal Hospital for Neurodisability); 'I train people on the Mental Capacity Act - frontline Health and Social Care staff - and this is just such a fantastic resource for that. It's very powerful and bring[s] all the concepts that are so hard to put across - make them come alive for people.' (Sue Lee, Director, Empowerment Matters); 'a very very important resource so that they [family members] can understand the process ... and also what to expect when they come into contact with the law around making decisions in the best interests of the patient' (Yogi Amin, Irwin Mitchell Solicitors). Family members using the resource report that the factual information is invaluable, that watching the film clips helps 'break down the isolation' and feels 'liberating ('I didn't know I was allowed to even think [that]') and that the site is great to show friends (so they 'got a better sense of what's really going on'). They also report that the resources we have developed are helpful to share with clinicians ('to get that conversation going'). One commented that she had learned more in an afternoon of looking at the website than she had in the year since her relative's injury and family members emphasized that they found the site empowering, and that it (along with the accompanying 'time-line' booklet) helped to give a 'road map' to navigate an extraordinarily difficult situation. The new online resource has provided support and information to families and practitioners and helped to improve professional-family communication and best interests decision-making (see comments above). We have received many requests to give talks/deliver training and to further develop the resource. In addition to the (over two dozen) talks already delivered (and listed in 'Engagement Activities') we have invitations to present talks/training based on our new resource at a dozen events in the near future. These include: presenting to clinicians at the National Rehabilitation Hospital (NRH), Dublin, Ireland; training advocates at Irwin Mitchell, Leeds and contributing Grand Rounds at two hospitals in Brisbane. We have also been asked to present to the 'Centre for Medical Ethics, Professional Practice and Law' at University of Queensland and to the 'Australian Centre for Health Law Research', Brisbane and to be keynote speakers at the Brain Injury Rehabilitation Trust international conference in 2015. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.healthtalk.org/peoples-experiences/nerves-brain/family-experiences-vegetative-and-minimal... |
| Description | Working Party (National clinical guidelines) (Published December 2013) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The on-going work on the ESRC Knowledge Exchange Project helped contribute to the final stages of developing National Clinical Guidelines. Dialogue with family members during the course of the research fed into discussion ensuring service-user voices were heard and that the needs of family members were addressed - especially in relation to clear guidance about their role and the process of decision-making about medical treatment. The guidelines have been launched at a series of events providing training and guidance to many clinicians who report that it helps to improve their understanding of clinical and legal issues and improve practice in managing patients in prolonged disorders of consciousness |
| Year(s) Of Engagement Activity | 2012,2013 |
| URL | https://www.rcplondon.ac.uk/resources/prolonged-disorders-consciousness-national-clinical-guidelines |
| Description | Workshop training to Allied Health Professionals (Pilot) April 21-22nd 2016 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Undergraduate students |
| Results and Impact | Workshop training to Occupational Therapy pre-registration students - piloting 6 hours of workshop materials for use in the teaching of Allied Health Professional students in Cardiff University's School of Healthcare Sciences |
| Year(s) Of Engagement Activity | 2016 |
| Description | Workshop training to Allied Health Professionals (Pilot) June 20th 2016 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Undergraduate students |
| Results and Impact | Workshop training to Allied Health Professionals, AHP roles - diagnosis and prognosis of VS/MCS, core skills for AHPs, Communication skills, Best Interests, ethics and law. Health Sciences, Cardiff University |
| Year(s) Of Engagement Activity | 2016 |
| Description | York Festival of Science - exhibition and stall (22 June 2013) |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | The activity was held in a marquee in the main shopping street in York and consisted of an exhibition (Postcards written by family members of people in long-term 'coma') and a stall, staffed by CK and a local supporter of the charity Compassion in Dying (which distributes Advance Decision templates). The exhibition and stall sparked a lot of questions and discussion. Members of the public talked about their own views and experience of end-of-life issues with CK and CiD, described their reactions to the exhibition, and took approximately 60 AD templates for completion. People reported a change in their understanding of 'coma' and the need for Advance Decisions. |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://en.wikipedia.org/wiki/York_Festival_of_Ideas |
| Description | Yornight - European Researchers' Night (26 Sept 2014) |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Celia Kitzinger gave a talk (to about 50 people) called Coma: Retelling the Story which focused on media (mis)representation of coma, and showed a short film from our healthtalk.resource featuring family members of people in long-term 'comas' talking about their experience of the media and how it impacted upon their response to coma in their own family. The film was made as part of our work on ESRC award reference ES/K00560X/1. At the same event, and in association with two local supporters of the charity, Compassion in Dying, we also mounted an exhibition and ran a stall for the public which included information about Advance Decisions and offered a sign-up sheet for members of the public who wanted one-on-one appointments at an AD Clinic to assist in writing their own. The impact here demonstrates a productive synergy between activities associated with two different awards in which the PIs of both are involved (Celia Kitzinger is PI on ES/J022306/1 and Co-I on ES/K00560X/1; Jenny Kitzinger is PI on ES/K00560X/1 and a fully-participating member of the seminar series funded by ES/J022306/1.) After the talk there was a surge of interest in the stall about coma and ADs. We were fully occupied for about two hours with conversations with people about coma and ADs. About 50 people took AD templates and 6 made follow-up appointments for further information and help in filling them in. The talk about 'coma' had clearly challenged people's preconceptions and raised concern about end of life choices. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://yornight.com/activities/health/coma-retelling-the-story/ |