Background New models of care, developed using child-centred research methods, are required for dying children (Together for Short Lives. A guide to children’s palliative care. 2018, 4th ed). We are creating a new strategic plan to deliver paediatric palliative care, informed by numerous voices through a storytelling approach to engage children.
Aims To create a ‘polyphonic narrative strategy’ (Weidinger. Polyvocal narrative strategy: Turning many voices into durable change. 2020) – an organisational strategic plan, told through storytelling and visual art (Boje. Storytelling organizations. 2008), embodied by the many voices of the children and families who access our hospice services, and the staff and volunteers who deliver them.
Methods A project team, including people with lived experience, used Most Significant Change (MSC) (Davies & Dart. The ‘Most Significant Change’ (MSC) technique: a guide to its use. 2005), a participatory story-based approach, and Sentiment Analysis (SA) (Venkateswarlu, Kumaresh & Janardhan. Asian J Computer Sci Tech. 2019; 8(S2); 1–6), a process of identifying the polarity of words, to collect and analyse important meaningful care events, told in stories and art.
Results Through artwork and stories, 40 children (aged 4–11, 45% referred, 13% bereaved) described a hospice service offering love and happiness – a place where they could live. 56 families (48% bereaved) told stories that revealed tragedy and sadness compounded by significant trauma. Family life is hard when caring for a child expected to die young. When your child dies, life gets even harder. 84 staff and volunteers told stories that directly correlated with those told by families. Families told stories of a constant fight, and staff told stories of the constancy of our care.
MSC identified stories that best encapsulated our work which defined the core purpose of the strategy. The analysis identified ‘critical junctures’ where our care is most needed, giving structure and direction to the strategy. SA identified the attitudes of children and families towards our care and word frequencies helped create new organisational values to underpin the strategy and everything we do.
Conclusion Multiple interpretations of our service coalesced forming the initial stage of our new strategic plan. Next steps will coproduce priorities and objectives based on the ‘critical junctures’ with children and families.
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