PAINT Breathlessness
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 发起方
- 入组人数
- 45
- 试验地点
- 1
- 主要终点
- Art Workshops, Focus Groups and Semi-Structured Interviews
研究概览
简要总结
An individual's experience of their breathlessness is influenced by multiple factors including their medical condition, psychology, sociological and situational circumstances which will include ethnicity. There is currently a lack of evidence exploring the impact of ethnicity in the experience and presentation of breathlessness.
The non-medical management of breathlessness in respiratory diseases includes pulmonary rehabilitation (PR). PR is a highly evidenced exercise-based intervention to help manage breathlessness, improving health-related quality of life and improving survival. Recent audits in England and Wales showed 89% of patients attending PR were recorded as having a White British ethnicity which is in contrast to national ethnicity demographics. This may be because the cultural acceptability of PR components are not fully considered. Therefore, this study will explore how individuals with cardiorespiratory disease from different ethnicities from the Leicestershire population experience and manage their breathlessness through art workshops, focus groups and interviews. Informed by these results, the study team will work with individuals from under-represented ethnicities and key stakeholders to co-design adaptations of PR that may improve the management of breathlessness in underrepresented ethnicities that do not attend conventional PR programmes.
The study is funded by the Wellcome Trust as part of the Leicestershire Health Inequalities Improvement Programme at the University of Leiceste
详细描述
An individual's experience of their breathlessness is influenced by multiple factors including their medical condition, psychology, sociological and situational circumstances which will include ethnicity. There is currently a lack of evidence exploring the impact of ethnicity in the experience and presentation of breathlessness.
The non-medical management of breathlessness in respiratory diseases includes pulmonary rehabilitation (PR). PR is a highly evidenced exercise-based intervention to help manage breathlessness, improving health-related quality of life and improving survival. Recent audits in England and Wales showed 89% of patients attending PR were recorded as having a White British ethnicity which is in contrast to national ethnicity demographics. This may be because the cultural acceptability of PR components are not fully considered. Therefore, this study will explore how individuals with cardiorespiratory disease from different ethnicities from the Leicestershire population experience and manage their breathlessness through art workshops, focus groups and interviews. Informed by these results, the study team will work with individuals from under-represented ethnicities and key stakeholders to co-design adaptations of PR that may improve the management of breathlessness in underrepresented ethnicities that do not attend conventional PR programmes.
The study is funded by the Wellcome Trust as part of the Leicestershire Health Inequalities Improvement Programme at the University of Leiceste
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 100 Years（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Stage 1: Art Workshops, Focus Groups and Semi-Structured Qualitative Interviews Willing and able to provide informed consent for participation in the art workshop, focus group/semi-structured qualitative interview Any individual over 18 years across ethnicities Able to communicate in spoken and written English OR Art workshop and interview: translator for an individuals preferred spoken and written language is available.
- •Identifies as Grades 2-5 on the Medical Research Council Dyspnoea Scale (MRC). Eligible for PR (e.g., confirmed respiratory condition, functional limitations due to breathlessness).
- •Stage 2: Experience Based Co-design Willing and able to provide informed consent for participation in the co-design process.
- •Any individual over 18 years Able to communicate in spoken and written English or a translator for their spoken and written language is available.
- •Eligible for PR (e.g., confirmed respiratory condition, functional limitations due to breathlessness) and identifies as an ethnicity that the intervention is being adapted for or a family member, friend or carer of an individual with breathlessness that is eligible for PR and identifies as an ethnicity that the intervention is being adapted for OR works for healthcare provider in a service that refers to or delivers PR OR is a charity representative.
- •Able to attend co-design workshops
排除标准
- •Stage 1: Art Workshop, Focus Groups and Semi-Structured Qualitative Interviews Unable to provide informed consent Any individual under 18 years Art workshop and interview: If no translator available. Focus group only: not able to speak English due to group interaction required. Identifies as Grade 1 on the MRC scale. Not eligible for PR (e.g. any significant comorbidities which limits exercise training ability).
- •Stage 2: Experience Based Co-design Unable to provide informed consent. Any individual under 18 years If no translator is available. Not eligible for PR or does not identify as an ethnicity that the intervention is being adapted for OR a family member, friend or client is not eligible for PR or does not identify as an ethnicity that the intervention is being adapted for OR does not work for a healthcare provider in a service that refers to or delivers PR OR is not a charity representative.
- •Unable to attend co-design workshops
结局指标
主要结局
Art Workshops, Focus Groups and Semi-Structured Interviews
时间窗: 21 months
stage 1
次要结局
- : Experience Based Co-design The co-development of an intervention for breathlessness for under-represented ethnicities.(21 months)