Carers – their role and informational needs in vasculitis’ (CAREVASC)
Research type
Research Study
Full title
The role of informal carers in the management of vasculitis and their informational needs(CAREVASC)
IRAS ID
184632
Contact name
Richard Watts
Contact email
Sponsor organisation
University of East Anglia
Duration of Study in the UK
0 years, 12 months, days
Research summary
Carers have a close relationship with patients but their specific needs are rarely investigated.The role played by carers in the lives of patients with chronic disease is not often studied. We plan to investigate the role of carers in the lives of patients with a specific form of blood vessel inflammation(ANCA vasculitis). We also plan to investigate the informational needs of carers of patients with ANCA vasculitis as we have shown previously that patients have high informational needs relating particularly to diagnosis, prognosis, investigations, treatment and its side effects. What is not known is whether their carers also have high informational needs and whether they are the same. Patients for example rated psychosocial care as relatively unimportant, but carers may view this has more important. This project aims to investigate the informational needs of carers and to determine their unmet needs by conducting an electronic and postal survey of the membership of a patient support group Vasculitis UK. We will ask both patients and their carers to complete the survey separately to enable comparison of their needs. In addition we will explore the needs of carers and how these may differ from those of the patients. We will conduct separate face to face interviews with patients and their carers. The interviews will be audio recorded, transcribed and then analysed looking for common themes.
REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
16/EM/0190
Date of REC Opinion
27 May 2016
REC opinion
Further Information Favourable Opinion