An Exploration of the Experiences and Support Needs of Young Adults With Severe and Uncontrolled Asthma
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 46
- 试验地点
- 1
- 主要终点
- Patient perceived experiences and challenges of living with severe and or uncontrolled asthma
研究概览
简要总结
Asthma is a serious long-term lung condition caused by swollen airways that narrow. This causes wheezing, chest tightness, and breathlessness. Most asthma is well-controlled with medication.
However, 5-10% of asthmatics have severe asthma where treatment does not control symptoms and up to 67% of asthmatics have uncontrolled asthma, caused by not always taking medication as recommended, lifestyle choices or other health problems worsening their asthma.
In the UK, asthma affects around 800,000 young adults. This group is at high-risk of having poor asthma control, worse outcomes than other age-groups. This is because young adults need care that differs from other age-groups and current care is not meeting these needs.
There is little information on the experiences and needs of this group and very few studies exist, exploring how to improve care. This study will explore the experiences and needs of young adults (age16-25) with severe and uncontrolled asthma.
Methods. The investigators will perform two study-arms with young adults with severe/uncontrolled asthma in Manchester and Liverpool severe asthma centres:
Study-arm 1: Interview participants using photographs chosen by them to help explain their experiences of living with asthma and support that they need.
Study arm 2: Perform group interviews to understand participants' thoughts around the insights from study-arm 1 combined with their own experiences. To explore and develop ideas on how to improve future care.
At the end of both study arms, a workshop involving patients and stakeholders involved in delivering care will take place, to identify a joint goal of how to improve care in this cohort and map ways in which to achieve this.
Together, the study results and workshop will increase our understanding of the experiences and needs of young adults with asthma. Helping us to identify new ways to improve care which can be tested in future research.
详细描述
Research question "What are the experiences, and support needs of young adults living with severe and uncontrolled asthma?"
Aim To develop a rich in-depth understanding of the lived experiences, challenges, and perceived support needs of being a young adult with severe and or uncontrolled asthma.
Objectives
- Examine in -depth the day-to-day experiences of living with severe asthma through undertaking 1-1 in-depth interviews using photo elicitation techniques.
- Identify participant support needs through undertaking focus groups
- Combine results from 1-1 and focus group interviews, to help inform and develop future interventions/research.
- To develop a theory of change with patients and stakeholders.
Study design A qualitative design using photo elicitation driven semi-structured one-to-one interviews (work package 1) followed by focus group interviews, (work package 2) concluding with a Theory of Change (TOC) workshop.
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
- 16 Years 至 25 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •A confirmed diagnosis of severe or uncontrolled asthma under the care of the Manchester or Liverpool severe asthma services
- •Participants aged 16-25 years.
- •Informed consent provided.
排除标准
- •Inability to provide informed consent.
- •Participants with additional long-term conditions who identify their dominant health concern to be non-asthma related.
- •Focus group only- inability to converse in English
结局指标
主要结局
Patient perceived experiences and challenges of living with severe and or uncontrolled asthma
时间窗: 12 months
The investigators are not directly using tools/scales to measure outcome measures but will be using the data generated from the in depth interviews and focus groups to understand subjective participant perceived experiences and challenges of living with severe/uncontrolled asthma. in seeking to understand this, the investigators will meet the intended primary outcomes of the study.
次要结局
未报告次要终点