In this new series, The Arts in Palliative Care, we look at how the arts in palliative care settings can be a powerful and effective way of addressing the practical, psychological, social and spiritual issues that face people at the end of their lives.
Alison Ward, Researcher at the University of Northampton, UK, Miranda Quinney, Storyteller and Biographer, Watford, UK and Jane Youell, Dementia Specialist Consultant, Milton Keynes, UK, recently presented a poster outlining the programme, Sharing Stories for Wellbeing, at the Facing Death Creatively conference at St Christopher’s Hospice, London, UK.
St Christopher’s conference explored ‘how the Arts can be utilised to make sense of and provide comfort at the end of life and in bereavement’. We were delighted for the opportunity to share an outline of the life storytelling programme that Miranda has been developing since 2011 and which was evaluated by Alison and Jane of the University of Northampton in 2015. Here, we seek to explain the inspiration for developing the programme and why it has attracted so much attention.
As a professional storyteller and biographer, Miranda was fascinated that biographical stories were often heard by friends and family for the first time as part of a eulogy. It seemed a shame that the story had not been shared earlier but finding the time and opportunity to share seemed to be a problem. A chance encounter with the team at a local hospice provided a solution to accessing people with stories to tell, in a supportive environment prepared to encourage the sharing. Miranda went on to develop Sharing Stories for Wellbeing (SS4WB) over the next few years offering storytelling workshops for small groups of people in palliative care, to share their life stories using themes as topic guides. These sessions are facilitated by experienced session leads and hospice staff. Stories are written by the facilitator and ‘gifted’ back to the participant who can keep and share their stories. SS4WB aims to: recount and record life stories; provide opportunities to reflect, accept and understand; provide opportunities to acknowledge the value of life and the contribution made; provide opportunities to make sense of experiences, express emotions and be able to move on. Anecdotal reports found that sessions enabled participants to gain control of their lives and to build confidence and self-esteem.
In 2015, the University of Northampton evaluated SS4WB, led by Alison and Jane. Using a mixed methods approach, the evaluation undertook participant observations (n=2), face-to-face interviews with hospice staff (n=3), family members (n=1) and participants (n=3). The data from all elements were analysed thematically and four core aspects of the value of SS4WB emerged: ‘pleasure’; ‘what makes you, you’; ‘more than just a patient’; ‘benefits beyond the group’. Participating in SS4WB led to feelings of control, confidence, enjoyment of the sessions, and of being valued. Participants found the social aspects of the sessions of particular importance, forming new friendships and bonds by being together in the group.
When observing SS4WB workshops, we noted that an important part of the workshops is also listening to other people’s stories and offering validation of their experiences. Engaging in story work can provide a way to reflect on what can be a life-changing diagnosis, offering positive impacts on people’s wellbeing, quality of life, sense of self-identity and socialisation. Story work can help to make the past meaningful and the future have purpose (Romanoff & Thompson, 2006) and working in groups can create a collective meaning to the process (Abma, 2003).
News of the workshops and the positive link with wellbeing began to spread in the palliative care area. Hospice UK and the National Council for Palliative Care (UK national charities) supported master classes for palliative care practitioners keen to learn how to facilitate sharing stories groups as part of their own practice. Individual hospices requested in-house training for staff with a variety of backgrounds including spiritual care, creative therapists, volunteer helpers and clinical teams. Conference programmers in the UK and beyond have invited SS4WB to share their findings.
Storytelling is something we all naturally do as humans, indeed, it is part of what makes us who we are. The training workshops provide a simple, achievable framework for life story sharing which we can then adapt to the unique needs of our patients and environment.
- Sharing Stories for Wellbeing – has provided training for more than 150 palliative care practitioners from over 30 hospices.
- Next week: Victoria Swan, Music Therapist at Demelza Hospice Care for Children. Read more post in the Arts and Palliative Care series on the EAPC Blog.
Abma, T.A. (2003) Learning by telling, storytelling workshops as an organisational learning intervention. Management Learning, 34 (4), 221-240.
Romanoff, B.D. and Thompson, B.E. (2006) Meaning construction in palliative care: the use of narrative, ritual, and the expressive arts. American Journal of Hospice & Palliative Medicine, 23 (4), 309-316.