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2013

Digital storytelling to put compassion back at the heart of social care

29 May 2013

Open the Dementia Learning Package

An innovative new digital resource that puts compassion right at the heart of social care will today (Wednesday, May 29th) be sent to the Nursing Directors of NHS Boards across the United Kingdom.

Entitled “”, the resource is a unique collection of reflective digital stories created to help people working in care re-engage with the personal experiences of their patients.

Recent reports – such as the Francis Report into the Mid Staffordshire NHS Foundation Trust – have identified that there is a lack of compassion in the care and treatment of older people within the NHS.

The digital stories offer a practical solution to help address this.

Researchers at the University of Abertay Dundee and specialists from the award-winning Patient Voices Programme created the stories in a Reflective Digital Storytelling workshop with seven patients in the early stages of dementia, and one paid carer.

Each story is unique and is of personal importance to the individual telling it.

There was no obligation for the narrators to talk about their illness, but knowing that the story is told by someone with dementia, shapes how the listener hears and interprets it.

Each story is a blend of their past and present lives, and is accompanied by photographs and a series of reflective questions.

Together, these encourage the listener to think about the person telling the story, and about how they could use the insight the story has given them into the patient’s life, to provide the patient with better care.

Taken as a package, the stories equip the listener with what is known as “aesthetic knowledge” – an understanding of the human experience that is integral to the capacity of nurses to care for their patients.

It is hoped, by drawing the attention of NHS staff to the free availability of this resource, that it will lead to more compassionate care being delivered by both current and future healthcare providers and practitioners.

Dr Rosie Stenhouse, who was part of the team that developed the resource, explains why this is so important:

“In this post-Francis era - where the spotlight is going to be increasingly on nurse education, nursing practice, and how we are going to ensure that compassion is right at the heart of our care system – we need to take positive action to make sure that the type of poor-practice that occurred at Mid-Staffordshire Hospital, and elsewhere, never happens again.

“Policy changes can take months, if not years, but the digital stories in this collection are freely available online right now, so anyone working in a care setting, anywhere in the world, can access them.

“They can be used as a group teaching tool within hospitals, or can be listened to at home, and are as relevant to students as they are to those already working in care.

“We know from research that digital storytelling has a real impact on people’s emotions and helps with the development of empathy, so digital media has opened up a whole new range of teaching and learning opportunities for us.

“Previously, we relied on inviting patients into the classroom to talk about their experiences of healthcare and their health issues, but there have always been a number of ethical concerns about asking somebody with dementia to do this.

“So instead, we’ve relied on videos and other recorded material, where carers, and sometimes people with dementia, have talked about their illness-related experiences in response to interviewers’ questions.

“But with the digital stories there were no interviewers asking questions – each story was chosen and developed by the person narrating it, and each one is personal to the storyteller, so this is very different from what we’ve been able to do before.

“The digital stories aren’t designed to replace current teaching, but they do add a new dimension to it. They don’t all have to be listened to at once – they can be used over a range of different teaching sessions - and, because there are seven of them, it really helps get across the diversity of experiences that dementia brings.

“Because they are the stories of real people – mothers, fathers, brothers, sisters, husbands, wives – who have lives, histories, interests, jobs, and families, they really tap into people’s emotions, and it’s this personal connection that really draws people into the stories when we play them."

Pip Hardy from the Patient Voices Programme said:

“Patient Voices was initially set up to give a voice to people who are not heard, and to help them tell their stories in such a way that the clinicians, managers and decision-makers listening to them become aware of the effects that the actions and decisions they take have on their patients.

“The use of stories as an educational resource is based on the acknowledgment that behavioural and systemic change often stems from a felt understanding of the implications of decisions, rather than from a purely abstract or theoretical one.

“Stories can be used to communicate visions and needs in a powerful way, as they offer a compelling and practical means of exploring issues and experiences from different perspectives, while promoting reflection and stimulating dialogue and debate.

“Robert Francis QC recently wrote in his report on the Mid Staffs scandal that “It is the individual experiences that lie behind statistics and benchmarks and action plans that really matter”, and it is these “individual experiences” that the Patient Voices digital stories get across.

“In the past year alone, we’ve had over 750,000 hits on our website, with a significant number of stories being downloaded for use in education and quality improvement programmes, and we hope that this number will continue to rise, as healthcare workers and management take action in the wake of the Francis report.”

The resource can be accessed on the homepage of the Abertay University website.

ENDS

For media enquiries please contact Kirsty Cameron T: 01382 308935 M: 07922041198 E: k.cameron@abertay.ac.uk

Notes to Editors:

  • In addition to the NHS Nursing Directors, information about Dangling Conversations will be sent to research institutions, health ministers, local authorities and health care charities across the UK.
  • The resource is freely accessible on the Abertay University website: http://www.abertay.ac.uk/studentlife/schools/shs/danglingconversations/
  • The digital stories were created by the staff and service users of the Dundee Alzheimer’s Scotland Resource Centre during a four-day Patient Voices workshop facilitated by The Patient Voices Programme and researchers at the University of Abertay Dundee.
  • The Patient Voices Programme was founded by social entrepreneurs Pip Hardy and Tony Sumner in 2003, and aims to facilitate the telling and the hearing of some of the unwritten and unspoken stories of ordinary people so that those who devise and implement strategy in health and social care, as well as the professionals and clinicians directly involved in care, may carry out their duties in a more informed and compassionate manner.

The Patient Voices digital storytelling methodology is recognised by the National Audit Office (NAO), and others, as providing an excellent way to gather qualitative data about what really matters to patients, carers and service users.

The work Patient Voices has done on stories and storytelling in healthcare is a key element in a new initiative concerned with ‘humanising healthcare’ that involves the NAO, the Appointments Commission, the Royal College of Nursing and others.

Dangling Conversations is just one of over 500 stories on the Patient Voices website, that are told by people of different ages, from different cultures, about different experiences and a wide range of conditions.

The Patient Voices Programme won the British Medical Journal Award for Excellence in Healthcare Education in 2010; received a commendation in the 2007 Creating an Interprofessional Workforce (CIPW) Awards, and won the Dartmouth Hitchcock University Clinical Microsystems Conference Award for Minimizing Unnecessary Switching - Patients, Learners, and Professionals - Fewer Handoffs and the People's Choice (Paul Batalden) Award in 2004.”

  • Aesthetic knowledge was first identified by Carper – an influential nursing education theorist – in 1978 and is now an established academic concept that is increasingly being used in clinical practice and policy-making.
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