Psychosocial support for people with Systemic Lupus Erythematosus
Research type
Research Study
Full title
Developing psychosocial support for people with Systemic Lupus Erythematous (SLE) through co-creation.
IRAS ID
327534
Contact name
Beatrice Payne
Contact email
Sponsor organisation
The University of the West of England, Bristol
Duration of Study in the UK
2 years, 0 months, 28 days
Research summary
People with Systemic Lupus Erythematosus (SLE) experience a psychological (thoughts, feelings, and behaviours) and social (relationships, ways of participating in society) impact of their condition. This can include worries about how their condition will progress, how drug treatment will affect them, appearance, feeling emotional, sex and intimacy, pregnancy, being able to do the things they want to, work, loss of income, and dealing with having to rely on others.
At the moment, support for people with SLE depends on which hospital they are treated at and who they are treated by. There isn't a package of psychosocial (psychological and/or social) support that has been developed for people with SLE, and there isn’t any research that tells us what support people with SLE would like, how they would like to receive it (e.g., where, who by, how often), and how that is different in different groups of patients (e.g., age, gender, ethnicity, disease severity).
1.We will send a survey to people with SLE in the England to ask about their experiences of support, what support they would like to receive, and what would stop them or help them get support. We will also ask for permission to contact them again.
2.We will then invite 15-20 of these patients who have given a range of different views in the survey to take part in a one-to-one discussion (interview) to talk about their views in more depth.
3. We will send a survey to health professionals (specialist nurses, physiotherapists, occupational therapists, psychologists, rheumatologists and nephrologists) from both specialist Lupus centres and non-specialist rheumatology clinics. They will be asked about how they currently support people with Lupus, what gaps they think there are in support, and what their training needs are to help them provide support.REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
23/EM/0202
Date of REC Opinion
13 Nov 2023
REC opinion
Further Information Favourable Opinion