Launch of PAINT Policy Brief

Article written by Dr. Trisha Forbes, Research Fellow, School of Psychology, Queen's University Belfast

Overview

This PPI activity drew on the PAINT study (international maPping exercise of Arts Interventions in reNal uniTs), sponsored by NI Kidney Research Fund. This study was conducted in collaboration with international partners from WHO, the Philippines, University of Florida, and Realta (Ireland), aiming to identify current provision of arts interventions in renal units globally. 

Details of PPI Event

The PPI activity, which saw the launch of the PAINT Policy Brief, brought together all those involved in co-production of the document, in a relaxed social setting. Prof Helen Noble and Dr Trisha Forbes compered the evening’s events. Laura Evans-Hill, visual storyteller and Director of Nifty Fox Creative, who facilitated the co-design workshops, started proceedings explaining the process of how the Policy Brief came about. Other contributors on the evening, providing a range of artistic skills to the varied programme, were:

Megan Raynor: a PhD student, looking at sexual health in kidney disease. Megan is also a kidney transplant recipient and budding poet.Dr Claire Carswell: NIHR research fellow and an artist, who uses hyper-realistic pencil illustrations to explore the subject of medicine and disease.Joe Brennan: a storyteller and writer and former Artist in Residence with the Waterford Healing Arts programme which is part of Réalta, the national resource organisation for arts + health in Ireland.Stephen Greer: Kidney transplant recipient, Honorary Lecturer at Queen's University, Co-Chair of the Renal Arts Group, Artist and Arts Facilitator at the Prison Arts Foundation.William Johnston: Co-Founder of the Renal Arts Group, Honorary Lecturer at Queen's University, Poet, Playwright and double kidney transplant recipient.Rev. Jim McCaughan, Chair of the NI Kidney Research Fund provided the closing remarks.RAGBone played us out. They are a blues/rock trio formed at the outset of RAG, who have released two albums and are currently recording their third.

The event was attended by around 35 members of the renal community and beyond, and feedback has been really positive. Members of the Renal Arts Group were invited to attend and contribute to the evening’s programme. Realta were Project Partners in the PAINT Study and we were delighted that three members of their staff could travel up from Waterford to attend and participate in the event. Two policy makers from the HSC Trusts were able to attend the event. We also invited PhD Students from the School of Nursing and Midwifery and those who had participated in the co-design workshops, including members of kidney charities. We provided food and refreshments to attendees and reimbursed contributors PPI members for their time and travel expenses.

The PAINT Policy Brief may be accessed here: Bringing Arts Activities Into Kidney Heamodialysis Units to Improve Patient Outcomes

Reflections on the Event

In terms of outputs from the event, relationships have been forged and developed with and between a wide range of PPI members and other key stakeholders, including policy makers in the Health and Social Care Trusts. The findings of the PAINT research project have been developed in a unique and accessible way and recommendations are contained within the policy brief, which is available in hard copy on request and online. 

Thinking of the impact of the event on people with lived experience, in this case kidney patients and transplant recipients and their caregivers were given the opportunity to showcase their experiences and artistic talents, mainly through poetry, spoken word and visual art, something which has proved to be invaluable to these patients while on dialysis and on their kidney disease journeys more broadly. PPI members who were part of the event programme shared highly personal and emotive contributions, which were particularly well received and appreciated by the engaged audience. There were also many networking opportunities before and after the main programme.

Sustained PPI in PAINT Study

Relationships have begun through involvement in this event, while others have been significantly developed and reinforced. The event provided a great networking opportunity for members of the renal community, and those with an interest in the link between the arts and health more broadly. Our PAINT Project Partners in the Republic of Ireland, Realta, have agreed to continue the collaboration with members of the Renal Arts Group and have recently submitted a large grant application together to the Arts and Humanities Research Council – the CREATIVE Project. Relationships will also be sustained with the kidney charities – e.g. NI Kidney Research Fund and NI Kidney Patients’ Association through involvement in several events in the NI Science Festival and around World Kidney Day, for example.