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Case study: Stepping away from the desk: Using patient and carer networks, film and social media to improve acute dementia care

Dr Katie Featherstone used two awards from the NIHR Health Services & Delivery Research Programme to investigate how to improve care for people with dementia who were in hospitals. Through nurturing her networks, interweaving her passion for film, and drawing on her contacts from the arts, creative and commercial industries, Katie increased awareness and visibility of people living with dementia and their carers, and influenced policymakers, practitioners and managers working within acute hospital settings. 

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Stepping away from the desk: Using patient and carer networks, film and social media to improve acute dementia care

Author: Dr Katie Featherstone

Collaborating with highly involved service users and carers

Katie Featherstone wanted to improve care for people living with dementia. She knew there was an immediate and urgent need to get their stories out, if change were to happen.

Long before the research focus had been identified, Katie’s first step away from the desk meant meeting with people living with dementia and their family carers. She learnt that being on hospital wards was one of their most frightening experiences. Unfortunately, it was also common; in 2014 the Department of Health and Social Care reported that at least 25% of acute beds are occupied by someone with dementia admitted with an additional acute condition.

With repeated conversations, Katie and her networks of carers, service users and ward staff identified and refined research questions of key relevance to patients, carers and staff.

They were first awarded funding by the NIHR Health Services & Delivery Research (HS&DR) programme for an ethnographic study examining refusal of care among people living with dementia in hospital settings. Their next award from the programme was for a study to improve continence care for people living with dementia in acute hospital.

After five years of collaborating with highly involved service users and carers as co-applicants, steering group members and chairs, these are the people Katie feels most answerable to, by keeping the focus on improving services.

Making change happen

Katie knew that producing high quality research was important. But to make change happen, the research findings had to be communicated in ways that reflect how people consume knowledge.

Inspired by her network of users and carers, a wide range of engagement, or knowledge mobilisation, activities have been carried out. These included ongoing networking with staff, patients and carers, film, tv and radio, social media Instagram and Twitter, a website and a festival. Funders and collaborators for these activities include Dunhill Medical Trust, The Rayne Foundation and the British Film Institute Audience Development fund, in addition to the NIHR funding.

Patient and carer network

The patient and carer network grew from 12 to regular meetings of 50 people. Annual ‘consultation’ days help maintain and develop these relationships, where carers and people living with dementia attend for a good lunch, share experiences, and discuss what to do next (costed in at about £4k per event within the research study). One project to emerge was organising festivals for Dementia Awareness Week 2017/2018 in collaboration with Film Hub Wales and Chapter Arts cinema. Six hundred people living with dementia and their families attended these events.

Film

With her passion for and contacts in film, Katie decided to challenge and change the portrayal of people living with dementia and share their personal experiences of hospital care. While she was already working with the local arts centre and cinema Chapter Arts and the British Film Institute (BFI) on another project, Katie suggested ‘dementia friendly’ screenings to run during the daytime to attract new audiences. Chapter Arts and BFI loved the idea, as it was low cost and likely to bring in revenue; time was the only resource needed.

Several years later, although the research team is no longer involved, the screenings continue. This has contributed to a programme of training for cinema staff to extend access and reduce inequalities with:

  • The toolkit ‘Dementia Friendly Screenings: A guide for Cinemas’, in collaboration with BFI and Alzheimer’s Society.
  • ‘Opening Doors’ Diversity training days, designed to support film venues across Wales in diversifying their audiences (100 Cinema Staff across South Wales).

Film has been used in other ways too. People living with dementia and their carers often feel invisible. Through friends who are filmmakers (cinematographers and directors), ward staff, family carers and those living with dementia have been filmed telling their stories.

In the past four years, over 40 films have been created at a cost of about £30,000, mainly for travel, equipment and editing. The filmmakers, who are trained in dementia awareness, donate their time. This funding came in part from NIHR HS&DR. Some films are under 1 minute for Instagram and Twitter, and longer films are on their website 'Stories of dementia'.

The films and their footage will be fed into open access training for frontline ward staff (nurses and health care assistants) to provide the platform for a Massive Online Open Course (NIHR funded) ‘Caring for people living with dementia in acute wards’ (2020).

TV and radio

The collaborations with filmmakers (and artists and illustrators) led to working with television, radio and documentary teams. April 2018 was an especially good month. A friend who is a public relations expert and a member of the wider collaboration of filmmakers and artists mentioned the research “over the water cooler” to a BBC documentary producer. The BBC5 Live team saw the patient and carer films on the website and a summary of the NIHR research report. This led to a BBC Live Investigates documentary (44 mins) on the care of people living with dementia in hospital and a snowstorm of media interest including:

  • an appearance on BBC Breakfast (slot audience 1M+)
  • several interviews across regional BBC Radio
  • a feature within an accompanying film (BBC news online)
  • leading headline (and other) articles in The Guardian and Observer

Katie noticed a sea change in her visibility and opportunities to influence after this media attention.

Social media

Instagram and Twitter are important mechanisms to get messages across. Katie has a social media consultant, who she pays at a reduced freelance rate (costed into research contract for about £4,000 per 12 months of contract, or 2 days a month). This consultant set up two Twitter accounts, the Instagram account and a YouTube channel, which link to the research website. Several people can post on the project accounts.

Twitter has linked Katie into wider national and international networks of people living with dementia, carers, activists, clinicians, organisations and academics. For example, Katie recently had a paper published in the International Journal of Nursing Studies and via her and the journal’s Twitter accounts, the paper rapidly became one of their most discussed on Twitter with 280+ hits. In addition, it led to invitations to collaborate with academics in New Zealand and Philadelphia.

What was the impact?

Apart from the increased awareness and visibility of those living with dementia and their carers, these knowledge mobilisation activities have influenced policymakers, practitioners and managers working within acute hospital settings.

Given that research evidence suggests that personal interactions are the most effective way of influencing policymakers, Katie has had significant success as she has:

  • Met the Welsh Cabinet Secretary for Health and Social Care to discuss the research
  • Presented her research at the Welsh Government Cross Party Group launch and at further stages of their enquiry on dementia care in hospitals
  • Been asked to be a member of a Welsh Government committee to develop clinical training to reflect the needs of those living with dementia
  • Been a panellist at the ‘Dementia and Healthcare Concerns’ event, House of Lords
  • Been Invited to discuss evidence presented at the All-Party Parliamentary Group on Dementia enquiry on Dementia and Disability (House of Commons, November 2018)
  • Joined the Public Health Wales committee developing a proposed All Wales Dementia Hospital charter.

What’s more, her research was discussed in Parliament (12 May 2018) and in the Welsh Senedd (2 May 2018). It is cited in the Welsh Government strategy ‘Together for a Dementia Friendly Wales’ 2017-22. Katie has now become a ‘go to’ person for improving dementia care in Welsh hospitals.

Katie’s work has also had an impact on the ground. Her strong collaborative relationships with Chief Executives, Executive Directors of Nursing, Heads of R&D, and Dementia Boards have helped to inform strategy at hospital and ward levels, for example by developing no cost interventions to inform the organisation and delivery of care. Her films are used for training by many hospitals as part of their Continuing Professional Development for ward staff in collaboration with Admiral Nurses and Dementia UK. An acute trust is building a new hospital with advice from Katie and her team on how to support the needs of people living with dementia. She has supported interdisciplinary hospital improvement programmes on delirium and inappropriate prescribing of anti-psychotics in care homes (a Welsh Government strategic priority).

Overall, Katie’s evolving, opportunistic knowledge mobilisation approach has led to widespread impact influence across national and local policymaking and practice settings in Wales and England. And it all started when she stepped out from behind the desk

Why did this work?

Katie started out with a blank sheet of paper. She knew her area of interest but had no idea of the most germane issues to service users, carers and staff. So, she asked.

Through nurturing her networks, interweaving her passion for film and drawing on her contacts from the arts, creative and commercial industries, early knowledge mobilisation activities led to further connections which led to other networks which led to other knowledge mobilisation activities. Katie and her partners tapped into the arts, social media, mainstream media and the press; they didn’t rely on one route. All the while the profile and impact of Katie and her research was growing.

Although Katie did not have experience or knowledge of how to make change happen, she instinctively followed an evidence-based approach, as research suggests stories are powerful ways of influencing attitudes and decision-making. Katie also had funding, as knowledge mobilisation activities were costed into the HS&DR contracts, with supplements from other partners and generous reduced rates from collaborators. Generating impact through widespread collaborations was embedded into her approach from day 1.

Advice from Katie

  1. Start small. Have a daily practice from the beginning e.g. post or re-tweet once a day.
  2. Do the groundwork. Develop, nurture and invest in your patient, user and staff networks. This will build a foundation of collaborations to support the development and growth of your longer-term research programme, not just one study.
  3. Identify your passion, be creative and draw on your connections to focus on obtaining impact from Day One. Katie had lots of contacts in the film and media worlds, which she drew on. If you don’t have those contacts, then think about how you are going to make them early on so you can make a good case for including at least some of the work as part of the research.
  4. Recognise that it will take a lot of time and commitment before you see any impact.

Study details

Lead: Dr Katie Featherstone, Reader in Medical Sociology, School of Healthcare Sciences, Cardiff University

Research project:

  1. Underserved and overlooked: Investigating the management of refusal of care in people with dementia admitted to hospital with an acute condition
  2. Understanding continence practices in acute settings for people with dementia in acute hospital settings

Funding stream: NIHR Health Service & Delivery Research Programme

Dates of awards: 2015-2018 and 2017-2020

Aim of study: To understand ward cultures and the organisation and delivery of bedside care and its impacts on people living with dementia and the role of healthcare staff

Methods: Ethnographic approach informed by symbolic interactionism.