Stroke Odysseys: Evaluation of a Community-based Performance Arts Programme for People That Have Experienced Stroke
试验速览
- 阶段
- 不适用
- 入组人数
- 122
- 试验地点
- 2
- 主要终点
- To evaluate to what extent Stroke Odysseys is acceptable, to survivors and wider stakeholders using the Acceptability of Intervention Measure (AIM)
研究概览
简要总结
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.
详细描述
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. The impact also extends to family caregivers who experience higher rates of depression than the general population. This issue is a clear research finding expressed in numerous systematic reviews, including a meta-review by Pearce et al 2015. The review team highlighted: "The devastating impact of stroke on patients' self-image; the varying needs for self-management support across the trajectory of recovery; the need for psychological and emotional support throughout recovery particularly when physical recovery plateaus; the considerable information needs of patients and carers which also vary across the trajectory of recovery; the importance of good patient-professional communication; the potential benefits of goal-setting and action-planning; and the need for social support which might be met by groups for stroke survivors".
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 also confirmed the devastating impact of stroke on the lives of individuals and their carers. Responses from more than 11,000 stroke survivors and carers showed a range of 'hidden effects', which do not necessarily disappear with time, and in many cases, can be life-long. Most common were the effect on emotional and mental health, cognition, confidence, finances, social life and relationships. The survey findings also showed 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 Stroke Odysseys approach has been developed over a number of years and is facilitated by the charity Rosetta Life, with a track record of in hospital, hospice and community-based performance arts projects. This program aims to address the sense of abandonment and social isolation experienced by stroke survivors after statutory care (community rehabilitation) is completed. 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.
Trial design and aims: 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. Evaluation will take place across community settings in South London and involve stroke participants and the wider stakeholder community.
Stroke Odysseys comprises three distinct stages:
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •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
结局指标
主要结局
To evaluate to what extent Stroke Odysseys is acceptable, to survivors and wider stakeholders using the Acceptability of Intervention Measure (AIM)
时间窗: 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).
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.
To evaluate emotional wellbeing, participation and activity of stroke participants and any change pre and post SO programme using qualitative methods
时间窗: 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 emotional wellbeing, participation and activity of stroke participants and any change pre and post intervention - ethnographic research and interviews
To evaluate to what extent Stroke Odysseys is acceptable, to survivors and wider stakeholders using semi-structured interviews.
时间窗: Interviews will be conducted after the workshop (Week 12) and after stroke ambassador training (Week 16).
The primary outcome implementation measure is acceptability as measured by semi-structured interviews to explore reasons for acceptability.
次要结局
- To explore learning and experiences of facilitators and participants(After the workshop is completed (Week 12))
- To study the context, mechanisms and interactions which take place during Stroke Odysseys delivery(During workshop delivery (Week 6))
- To assess service utilisation and cost associated costs and changes in quality of life associated with the implementation of the programme(These measures will be collected after completion of the workshop (Week 12) and after completion of stroke ambassador training (Week 16).)
- To explore the facilitators and barriers to implementing the programme(Interviews will be conducted after completion of the workshop (Week 12) and after completion of stroke ambassador training (Week 16).)
- To explore stroke survivors' preparation and participation in performances(Baseline)
- 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).)
- 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 assess any unintended consequences of the programme(Interviews will be conducted after completion of the workshop (Week 12) and after completion of stroke ambassador training (Week 16).)
- To explore the facilitators and barriers to sustained use of the programme(Interviews will be conducted after completion of the workshop (Week 12) and after completion of stroke ambassador training (Week 16).)
- To explore the strategies including resource inputs utilised, used within individual sites to implement the programme(Interviews will be conducted after completion of the workshop (Week 12) and after completion of stroke ambassador training (Week 16).)
- To assess the adoption of the programme(This will be measured at baseline, after completion of the workshop (Week 12) and after completion of stroke ambassador training (Week 16).)
- To assess programme adherence and attrition rates(Data recorded from register on weekly attendance rates for 12-week programme (stage 1) and for 4-week ambassador programme (stage 2))