Fireflies Project: Testing creative activities with teenagers in a ‘Transition Clinic’ at Temple Street Children’s University Hospital
In February 2018, Helium Arts’ Fireflies artist-in-residence Siobhán Clancy was invited by Clinical Nurse Specialist (CNS), Mairéad Kinlough, to facilitate a creative activity as part of a ‘Transition Clinic’ at Temple Street Children’s University Hospital for teens with renal disorders who are preparing to move into adult services at Beaumont Hospital.
Fireflies is an artist-in-residence project by Helium Arts produced in partnership with Temple Street for teenagers preparing to transition to adult services. Artists in residence Rachel Tynan and Siobhán Clancy have been working collaboratively with patients to develop artworks based on the theme of ‘Transition’ and on the participants’ ideas, interests and experiences. The Fireflies project looks at how the arts can support transition to adult care and aims to promote independence, decision making skills, communication skills and improved self-esteem. According to a Systematic Review by Joanna Callinan and Prof. Imelda Coyne (2018), findings show “evidence for using creative activities as part of a health-promoting strategy to increase knowledge and enhance positive behaviour in children and young people. Group activities can provide peer support integral to young people and especially adolescents. It may also provide a creative engaging medium for learning through active participation and discovery. Creative activities empower young people to express themselves.”
‘Transition Clinics’ have developed as a format to support young people leaving children’s services and transferring to care in adult health settings. The transfer involves leaving familiar child-friendly environments where patients and parents have formed strong, trusting relationships with medical staff to the more anonymous setting of an adult facility. Coupled with the necessity of taking on increased responsibility for their own welfare, the change can be very difficult for young people. Family members, particularly parents, also have to adjust their habits to allow their child to exercise their own independence. At a time in their lives when more independence promises more freedom, teenagers with health conditions can often feel more restricted than their peers as they come to understand the long-term implications not only for their health but also for their social lives and future livelihood in terms of employment, travel etc. It’s not surprising that without adequate supports, the weight of these obligations combined with other factors such as exam pressure, moving away from home, greater access to drink and drugs and more active sex lives, health can suffer as adherence to treatment and following up on appointments becomes more challenging.
‘Transition Clinics’ are a response to needs identified by patients and their parents and are supported by the patient’s MDT (Multidisciplinary Team). They are intended to help young people prepare themselves to face the challenges ahead by providing a positive staged process through which they build skills in exercising their own agency in their health provision. At the ‘Transition Clinic’ in the Renal Unit in Temple Street, young people visit the MDT twice, before meeting the Consultant Nephrologist at Beaumont Hospital as part of a joint clinic. The Consultant Nephrologist is the designated consultant in Beaumont Hospital who looks after the young people in the clinic there, meeting with them at least three times in their first year to support their transition
Mairéad Kinlough and her colleagues draw from the Stepping Up programme developed by Prof. Imelda Coyne in Trinity College Dublin to guide renal patients through the Transition process at Temple Street. Mairéad became interested in incorporating arts activities into the ‘Transition Clinic’ on hearing of Helium’s work from Dr. Lisa Edwards (Nephrology Service Coordinator at Temple Street). Siobhán had been introduced to Dr. Edwards through her involvement with the Play Department as part of the Fireflies Project. Mairéad and Consultant Nephrologist Dr. Dolan were interested to see how receptive the young people would be to an arts activity.
Siobhán discussed her experience to date with Mairéad: working on the theme of ‘Transition’ with inpatients using the metaphor of journeys and the format of games to facilitate the building of confidence in navigating new experiences and the development of skills like communication and independent problem solving. Mairéad highlighted the key challenges of Transition, in particular, adherence to treatment and the risk of renal transplant rejection due to non-compliance. Siobhán proposed to facilitate an activity whereby participants due to begin Transition very soon could design their own ‘Transition Journal’ as a creative means of capturing their experience and to provide themselves with a practical resource to monitor their appointments and create care plans.
For Siobhán, designing creative processes for individuals that would fulfil arts and health objectives in a 15-minute session presented a challenge in terms of the quality of both process and outcome. However, it was important to honour the faith placed in the Fireflies programme and Siobhán as facilitator and work with the established format.
As it transpired, the time proved too short for the full artistic process planned by Siobhán simply because the patients required more time to understand the Transition process. So Siobhán concentrated on one activity which was intended to be one page of the Transition Journal: the Transition Map. The activity involved the artist doing a recap over the various stages of Transition and what would happen in each. All of this information had been provided by the MDT to the young people in the previous 30 minutes prior to them meeting the artist. However, it seems this information was forgotten or confused with everything else discussed in these sessions, so when the patients presented to Siobhán, they were unsure of the process and order of events.
On reflection, Siobhán and Mairéad realised that the initial discussion around Transition was likely to have overwhelmed the patients. So when Siobhán invited each of them to visually represent each stage of the Transition journey with a simple sketch or symbol, it enabled them to process the information further and gave them time for further questions and to express their thoughts and feelings around each stage.
Siobhán and Mairéad agreed that illustrating the Transition Map also gave the participants the opportunity to consider what other things might be going on in their lives at that time and what other milestones they might be reaching such as completion of exams, getting a driver’s licence etc. Siobhán found that linking Transition to other events in the young people’s lives helped to ground them in the reality of the impending change and view it in a positive light alongside other achievements that define transition from youth to young adulthood. The key for Siobhán is facilitating young people to integrate their health experience into their stories of themselves as teenagers or, rather, to come to terms with these aspects of their identities in ways that feel manageable, celebratory and filled with potential. As The Royal College of Physicians of Edinburgh Transition Steering Group outlined in 2008, “Adolescence is itself a developmental phase of physical, social, emotional and behavioural changes and transition from childhood to adulthood. This in itself raises issues as they move from dependence to independence and understanding their own identity. An important part of the adolescent phase is developing a self-identity.” As an artist, Siobhán feels strongly about the role of art in examining and evolving our self-identities throughout our lives.
The visual activity proposed by Siobhán gave the participants an outlet for expression during a significant moment in their lives and parents responded positively despite the additional time required to participate.
Afterwards, both Mairead and Siobhán agreed on the need for a whole team approach to Transition to ensure that young people are getting what they need. Conferring with the complete MDT at their weekly meeting would give the artist an opportunity to outline her methods and brainstorm with the whole team in advance to planning creative activities.
Both Siobhán and Mairéad found the experience worthwhile for all involved and took away a lot of learning from it. They agreed to plan how to incorporate arts in the next clinic for this set of young people. For Maireád, consistency in arts provision and good evaluation are key to the success of future iterations.
Following Mairead’s advice, Helium Arts has sought out other opportunities to develop a programme of Transition Arts Activities with the input of young people and their parents. In autumn 2018, Rachel and Siobhán will facilitate a Transition workshop for members of the Youth Advisory Committee of the Children’s Hospital Group (CHG) to experience and assess the activities they have developed for ‘Transition Clinics’.
 ‘Arts-based interventions to promote transition outcomes for young people with long-term conditions: A review’, Chronic Illness (July 2018) http://journals.sagepub.com/doi/10.1177/1742395318782370