Indwelling Pleural Catheters: Co-developing an Intervention to Support Self-Management
试验速览
- 阶段
- 不适用
- 状态
- Enrolling By Invitation
- 入组人数
- 116
- 试验地点
- 1
- 主要终点
- Capturing Health Care Professionals attitudes toward and beliefs about self-management
研究概览
简要总结
A pleural effusion is a build-up of fluid around the lung. In the UK, about quarter of a million people develop a pleural effusion each year. They are usually caused by advanced cancer or heart, kidney, or liver failure. People with a pleural effusion feel breathless and can't do the things they want to. Draining the fluid improves breathlessness and quality of life. This can be done by inserting a semi-permanent tube called an indwelling pleural catheter (IPC). This is drained at home about three times a week.
Drainage is usually done by a community nurse. However, it can be done by the patient or family/unpaid carers - this is called self-management. Self-management gives the patient the freedom to drain their IPC when they need to, without having to wait at home until a nurse is available. It reduces the burden on community nursing services. Despite these benefits, not all patients get the opportunity to self-manage.
The aim of this study is to help more patients self-manage if they want to. We will achieve this through three stages:
Stage 1: We will talk to patients with IPCs as well as their families/carers to find out their views on self-management and what stops people who could self-manage from doing so. We know that patients with an IPC can be frail. Often their families/carers are already doing a lot to support them. We will ask what might help them to self-manage if they would like to.
Stage 2: We will talk to healthcare professionals (HCPs) looking after patients with IPCs to understand what they think about self-management. This will include community nurses and the hospital teams who put IPCs in.
Stage 3: Along with our patients, their families/unpaid carers and HCPs, we will hold workshops to design an intervention that will help people to self-manage IPCs. We don't know what this intervention will look like yet. From talking to patients and families who already self-manage, we have found they like to learn from a demonstration on their own IPC followed by supervised self-management until they feel confident. Therefore, our intervention may include training sessions for HCPs on how to teach self-management.
This study grew from conversations with our patients. People with an IPC, family members and community nurses helped design the study. Our patient and public involvement (PPI) group will help design study materials and guide the study.
详细描述
Research question:
How can patients with an indwelling pleural catheter (IPC) and their family/unpaid carers be supported to self-manage?
Background:
Pleural effusion is the accumulation of fluid in the space between the lung and chest wall. It is a common complication of malignancy and affects approximately 200-250,000 people annually in the UK. People with such an effusion experience disabling breathlessness; this is treated by draining the fluid using IPCs (semi-permanent chest drains). These are usually managed at home by community nurses, but this can be done by the patient, family member or carer. Supported self-management is part of the NHS long term plan and British Thoracic Society guidelines state that patients should be supported to self-manage their IPC to promote independence. However, there is no evidence to support these recommendations, nor guidance on how self-management should be facilitated. There is thus an evidence gap at the heart of current recommendations.
Objectives:
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Cross Sectional
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
- •Stage 1 - Patients and family/unpaid carers
- •Adult (>18 years) who has (or has had) an IPC OR
- •Adult family member or unpaid carer of a patient who has (or has had) an IPC
- •Patients may currently be self-managing or receiving CN care.
- •Stage 2 - Healthcare professionals
- •Community nurse: experience of caring for a patient with an IPC within the last 12 months and signed-off as competent in IPC management
- •IPC-insertion site staff: any HCP involved in discussion with patients about post-insertion IPC care
- •Stage 3 - Co-design groups
排除标准
- •Stage 1 - Patients
- •Patient with a life expectancy of less than 6 weeks
- •Patient or family/unpaid carer who lacks capacity to offer informed consent (as judged by a suitably qualified HCP in accordance with Good Clinical Practice guidelines)
- •Stage 2 - Health care professionals o None
- •Stage 3 - Co-design groups
结局指标
主要结局
Capturing Health Care Professionals attitudes toward and beliefs about self-management
时间窗: Periprocedural
Data will be collected via focus groups and interviews. The different data collection designs reflect the nature of how the two groups of HCPs work and working patterns. The topic guide for the two activities will thus be largely the same and given the common subject matter it will be possible to analyse the qualitative data from these two approaches together. There will be some additional, group-specific, questions reflecting the different roles these two HCP groups play in the patient care pathway. The four objectives to achieve this are: 1. to identify support needs in relation to IPC and how unfulfilled needs impact ability to self-manage. 2. to identify barriers and motivators to IPC self-management among patients and family/unpaid carers. 3. to understand HCP attitudes toward, and practices related to, IPC-self-management. 4. to work with stakeholders to co-develop an intervention to facilitate IPC self-management.
次要结局
未报告次要终点