03 July 2017
Current Project: INITIative sponsored Public and Patient Involvement (PPI)
This project seeks to understand how IBD from a patient perspective through focus group sessions. The themes that this study explores include knowledge of IBD; satisfaction with care; the impact of IBD on day to day living; perspectives on quality of life; and understanding of the current IBD research. The study was designed with patient and clinician involvement and so far we have conducted focus groups in three hospitals in three counties: Dublin, Galway and Mayo.
To date the focus groups sessions have been extremely informative and have provided in-depth insight into the themes discussed. Notable recurrent themes include the hope for a cure; the need for better regimens of care including a focus on treating acute pain; the negative impacts of stress on disease activity and positive impacts mindfulness/ counselling programmes; the potential benefits from dietary interventions; the need for more understanding and acceptance among the general public about the range of symptoms associated with IBD; the financial burden of IBD care; and the restructuring of how IBD patients are cared for as inpatients.
Several further focus group sessions are planned and thematic analysis will be applied to the data collected. INITIative will then produce an “IBD Patients’’ Perspective Roadmap for Ireland” which will be used to inform research priorities and improvements in care at the national level.