Arts for Health: Towards well-being within the experience of stroke recovery

Kathleen Galvin and Caroline Ellis- Hill (Principal Investigator)

The Research for Patient Benefit Funding stream have funded a feasibility study of an RCT of an Arts for Health group intervention to support self confidence and psychological well-being following stroke.  The research is in collaboration with our practice partners, Royal Bournemouth & Christchurch Hospitals (RBCH) NHS Foundation Trust and Cambridge Community Services NHS Trust (CCS), Bournemouth University.

The proposal was instigated by Robin Cant, a stroke survivor. While working on the NIHR-Stroke Research Network (SRN) Rehabilitation Clinical Subgroup, he recognised that there was very little research into his experienced loss of confidence in life, a ‘hidden’ area of great importance to him. Through discussions with other stroke survivors it became apparent that this was a common experience. Currently NHS services focus on physical recovery and practical support in rehabilitation; however, the ‘hidden’ psychological aspects such as loss of self-confidence (Cant, 1997; Salter et al., 2008) are not addressed. As Harry Clarke said in a recent NHS document (2011) Psychological care after stroke "We’re not just legs and arms and a mouth…we are human beings with a mixture of emotions. All these feelings…self esteem, self worth, confidence, identity …they’re all under attack after a stroke…you can feel vulnerable, frightened and you can lose yourself." p4.

In an Arts for Health (AfH) approach, people are supported in small groups to feel safe to express themselves through creative activity. This allows them to explore their life situation and start to resolve ‘hidden’ psychological aspects. Creative arts offer the advantage of allowing people to express themselves without words. AfH interventions have been shown to be helpful in GP practices for people with low self-esteem/low confidence; however, to date they have not been tested after stroke.

A large interdisciplinary team led by Caroline Ellis- Hill are planning a national study to test whether AfH is beneficial for stroke survivors following hospital discharge. To aid planning we will carry out a  study of AfH randomly allocating half of our sample of stroke survivors to either AfH alongside usual care OR usual care only, to see if a) the methods we are planning work b) the ways of assessing participants' wellbeing, mood, quality of life, confidence and use of health services are appropriate c) stroke survivors want to take part and d) they value the intervention.  .

We have two centres (Bournemouth/Cambridgeshire) to allow testing of our procedures related to working across different geographical areas, and recruitment from different settings (hospital & community) and aim to  inform a future multicentre trial in which we will recruit from a variety of stroke service settings. The team comprise expertise in the following domains: people who have survived stroke, stroke rehabilitation, psychological aspects of stroke, trial design and management, qualitative research, the arts, medical humanities and health economics. The research will use qualitative methods and will also measure positive well-being and capability, including demographic, stroke-related, mood, wellbeing and quality of life domains as well as health service use and process measures. These data will help us to plan the methodology for the full national trial to test if

AfH is beneficial and to explore in what ways it is useful.

References

Cant, R. Rehabilitation following a stroke: a participant perspective. Disabil Rehabil

1997;19: 297-304.

Salter K, Hellings C, Foley N, Teasell R. The experience of living with stroke: A

qualitative meta-synthesis J Rehabil Med 2008;40: 595-602.

NHS Improvement-stroke. Psychological care after stroke Improving stroke services

for people with cognitive and mood disorders Leicester: NHS Improvement; 2011.