Stroke Odysseys: Evaluation of a Community-based Performance Arts Programme for People That Have Experienced Stroke

NCT04864470 | Unknown

• 1 other identifier: 219425/Z/19/Z-SO
• Study Type: interventional
• Target: 122
• Locations: 1 country
• Sites: 1

Brief Summary

There are over 1.2 million stroke survivors in the UK and annual costs of stroke care to the NHS will treble from £3.4 billion in 2015 to £10.2 billion in 2035. More than 60% of stroke survivors leave hospital with a disability, and half experience depression within the first five years. Emotional, social and psychological needs are common, often compounded by patients' perceptions of 'abandonment' when rehabilitation ends. Currently there is a gap between the social, emotional and physical needs of stroke survivors and the availability and suitability of long-term recovery and rehabilitation services. In 2018, a commissioned survey by the Stroke Association found 50% of stroke survivors and 85% of carers felt they needed more support than currently exists. Stroke Odysseys - the performance art programme- provides an opportunity for communication of experiences of stroke to an audience through acquired skills in movement, music, song and the spoken word. The performance arts courses delivered by Rosetta Life for stroke survivors have been evaluated in previous studies and have shown that engagement in and learning about performance skills can have a positive impact on perceptions of disability, improve cognition, mobility and speech disabilities among a stroke community that can be stigmatised by the public perception of disabling illness. The Stroke Odysseys programme will be scaled up to a large number of participants with the aim to evaluate the experience, impact and implementation of the programme. This prospective study will evaluate the experience and impact of Stroke Odysseys on those participating using mixed methods (interviews, observations and surveys) prior to and after each stage of the programme, and carry out non-participant observations during a percentage of the workshops, training and tour. This trial will also examine how effectively the programme is implemented and the factors (facilitators or barriers) that affect its implementation (i.e. implementation effectiveness). This will help us to identify not just 'if' but also 'why' the programme works and support our understanding of how it can be successfully delivered and scaled up within clinical pathways. Within this, the researchers will also explore the cost effectiveness of the programme, including the cost of its delivery and the balance of the benefit for the health sector, in order to be able to develop strong business plan for its longer-term use and wider scale implementation.

Conditions

Stroke

Keywords

Stroke; Health-arts intervention; Performing arts

Outcome Measures

Primary Outcomes (3)

• To evaluate emotional wellbeing, participation and activity of stroke participants and any change pre and post SO programme using qualitative methods

  To evaluate emotional wellbeing, participation and activity of stroke participants and any change pre and post intervention - ethnographic research and interviews

  The primary clinical outcome are qualitative changes in emotional wellbeing, participation and activity of stroke participants pre and post intervention (after 16 weeks)

• To evaluate to what extent Stroke Odysseys is acceptable, to survivors and wider stakeholders using the Acceptability of Intervention Measure (AIM)

  The primary outcome implementation measure is acceptability as measured by the Acceptability of Intervention Measure (AIM) A 4-item measure of perceived intervention acceptability. Items are measured on a 5-point Likert scale (Completely Disagree-Completely Agree). Score is calculated mean.

  The AIM will be collected during the workshop (Week 6), after the workshop is completed (Week 12) and after stroke ambassador training (Week 16). Interviews will be conducted after the workshop (Week 12) and after stroke ambassador training (Week 16).

• To evaluate to what extent Stroke Odysseys is acceptable, to survivors and wider stakeholders using semi-structured interviews.

  The primary outcome implementation measure is acceptability as measured by semi-structured interviews to explore reasons for acceptability.

  Interviews will be conducted after the workshop (Week 12) and after stroke ambassador training (Week 16).

Secondary Outcomes (12)

• To study the context, mechanisms and interactions which take place during Stroke Odysseys delivery

  During workshop delivery (Week 6)

• To explore learning and experiences of facilitators and participants

  After the workshop is completed (Week 12)

• To explore stroke survivors' preparation and participation in performances

  Baseline

• To evaluate to what extent Stroke Odysseys is appropriate to survivors and wider stakeholders

  The IAM will be collected during the workshop (Week 6), after the workshop is completed (Week 12) and after stroke ambassador training (Week 16). Interviews will be conducted after the workshop (Week 12) and after stroke ambassador training (Week 16)..

• To evaluate to what extent Stroke Odysseys feasible to survivors and wider stakeholders

  The FIM will be collected during the workshop (Week 6), after the workshop is completed (Week 12) and after stroke ambassador training (Week 16). Interviews will be conducted after the workshop (Week 12) and after stroke ambassador training (Week 16).

Study Arms (1)

Intervention

EXPERIMENTAL

Stroke Odysseys is a performing arts intervention for people who have had strokes which provides an opportunity for communication of experiences of stroke to an audience through acquired skills in movement, music, song and the spoken word. Stroke Odysseys comprises three distinct stages: 1. weekly workshops over 12 weeks for stroke participants facilitated by an integrated team of expert artists and ambassadors from the charity Rosetta Life 2. a smaller group of ambassadors recruited from the workshops will be trained to become co-facilitators (stroke ambassadors) 3. a performance tour including education and taster workshops for audiences.

Behavioral: Stroke Odysseys

Interventions

Stroke Odysseys BEHAVIORAL

The participants will take part in a twelve-week performance programme that takes place online/in a community halls/arts centre. Sessions run for three hours and during these sessions, participants devise a dance and music performance work from their own stories. The culmination of the programme will be a public facing performance to an audience of carers, health care practitioners, friends, family and the wider community, done online through Zoom. After the performance is completed, participants will be invited to a training programme where they learn to act as advocates for life after stroke - termed 'stroke ambassadors'. The training will be a four-day programme. The programme will take place once weekly and is led by a team of artists supported by a leadership coach, on Zoom. Following training, ambassadors will support artists in recruitment, befriend the newly discharged stroke survivors and take part in small scale performance tours to challenge the perception of disability.

Intervention

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• over 18 years of age
• have had one or more stroke(s)
• received inpatient care in a UK stroke care pathway and are able to follow a 2-stage command and hold a conversation in English if no supporter/friend is available to translate

You may not qualify if:

• any person with co-morbidities that would prevent participation in group activities e.g. dementia or deteriorating or fluctuating palliative conditions
• unable to understand English
• unable to commit to the 12-week programme

Sponsors & Collaborators

• King's College London: lead
• Rosetta Life: collaborator
• Kingston University and St George's: collaborator

Study Sites (1)

Institute of Psychiatry, Psychology & Neuroscience

London, SE5 8AB, United Kingdom

RECRUITING

Related Publications (1)

• Estevao C, Baldellou Lopez M, Davis RE, Jarret L, Soukup T, Bakolis I, Healey A, Harrington J, Woods A, Crane N, Jones F, Pariante C, Fancourt D, Sevdalis N. Evaluation of a community-based performance arts programme for people who have experienced stroke in the UK: protocol for the SHAPER-Stroke Odysseys study. BMJ Open. 2022 Mar 11;12(3):e057805. doi: 10.1136/bmjopen-2021-057805.

  PMID: 35277410 DERIVED

MeSH Terms

Conditions

Stroke

Condition Hierarchy (Ancestors)

Cerebrovascular Disorders; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Vascular Diseases; Cardiovascular Diseases

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 12, 2021
• First Posted: April 29, 2021
• Study Start: September 1, 2021
• Primary Completion: November 1, 2022
• Study Completion: November 1, 2022
• Last Updated: August 17, 2022

Record last verified: 2022-08

Locations

GB (1)