How Can the Experience of Hospital Outpatient Departments for Neurofibromatosis (NF) Patients With Sensory Challenges be Improved? An Experience Based Co-Design Project.
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 30
- 试验地点
- 1
- 主要终点
- Qualitative themes describing patient, carer and staff experiences of outpatient departments (identified through qualitative thematic analysis of interview, observation and workshop data)
研究概览
简要总结
This project aims to improve outpatient departments by working with patients and staff to make these spaces more inclusive for people with sensory challenges (it focuses on people with nerve tumour conditions as they are more likely to have sensory challenges). The project uses a well-established method called experience-based co-design (EBCD), which supports patients and staff to work together. It will run over 4 years.
详细描述
Participant experience overview:
People can choose to take part in one or more parts of this study. Some patients, carers and staff may be observed in outpatient waiting areas to help the researcher understand how the department works, and anyone who does not wish to be observed can let staff know and will not be included. Patients may be invited to take part in a one-off walking interview during their normal route to an outpatient appointment, and staff may be invited to take part in a single group discussion. Patients and staff who wish to be more involved can also choose to attend workshops over time to identify problems and work together to design improvements. Taking part in later stages is optional, consent is checked at each stage, sessions are audio recorded, and participants can stop at any time without giving a reason.
Data will be collected via Experience Based Co-Design (EBCD) stages. EBCD combines ethnographic methods and participatory quality improvement approaches to generate meaningful, co-designed interventions through iterative stages. Individual participants will be able to join as many stages as they would like and will be reconsented for each stage.
Stage 1: Observations using ethnographic methods: context setting via researcher field notes exploring and understanding patient, carers and staff experiences of outpatients departments.
The researcher will conduct 30 hours of shadowing, static observation and interviews of/with staff, patients and carers in outpatient waiting rooms.
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 99 Years（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Patients aged 16 or over who attend outpatient appointments coordinated by the Guy's and St Thomas' NHS Foundation Trust NF team
- •Patients who identify as having sensory challenges
- •Carers and relatives accompanying patients
- •Staff providing care for people with nerve tumour predisposition conditions at Guy's and St Thomas' NHS Foundation Trust in any job role or banding.
排除标准
- •Individuals who are unable to provide explicit informed consent.
- •Paediatric patients under 16 years of age.
- •Temporary staff who have spent less than one shift in their role.
结局指标
主要结局
Qualitative themes describing patient, carer and staff experiences of outpatient departments (identified through qualitative thematic analysis of interview, observation and workshop data)
时间窗: From enrolment through completion of all EBCD qualitative co-design activities, up to 24 months.
Interview transcripts, ethnographic field notes, walking-interview recordings, focus group and co-design workshop discussions will be analysed using qualitative thematic analysis to generate themes describing patient, carer and staff experiences of outpatient departments. These themes will include barriers and facilitators to accessing outpatient environments, priorities for improvement, and co-designed solutions.
次要结局
未报告次要终点