The lived experience of attending a IBD patient education programme
Research type
Research Study
Full title
The lived experience of attending a formal inflammatory bowel disease patient education programme. A phenomenological study.
IRAS ID
128869
Contact name
Victoria Ridgway
Contact email
Sponsor organisation
University of Chester
Research summary
The level of knowledge of Inflammatory Bowel Disease (IBD) patients is deemed to be poor and that IBD patients express a desire for further patient education (Butcher, Law, Prudham & Limdi, 2011; Bernstein, Promislow, Carr, Rawsthorne, Walker & Bernstein, 2011; Waters, Jensen & Fedorak, 2005; Borgaonkar, Townson, Donnelly & Irvine 2002). In attempt to address this identified need, a formal patient education programme has been instigated by a group of IBD specialist nurses in the northwest region of the UK. The programme began in February 2013 and is a rolling programme throughout this year. Studies within IBD have identified inconsistencies in the evidence of clinical effectiveness and economic value (Bernstein et al 2011; Larsson, Sundberg Hjelm, Karlbom, Nordin, Anderberg, Loof, 2003). National Institute of Clinical Excellence [NICE] (2012) have stated that a development of a Crohn’s disease educational and support programme could substantially reduce the cost of treatment and the social impact of the disease. However, further research is needed to determine the information and support needs of people with Crohn’s disease. To date, there are no qualitative studies exploring the implementation of a formal educational programme within IBD. Currently there is no evidence to understand the impact of providing patient education on the lived experience and lifestyle of having IBD.
The aim of this qualitative study is to evaluate the impact of a formal patient education programme on participants lived experience of IBD. This will allow a greater insight into the developmental of any future educational programme. The objectives of the study are, to establish what factors influenced the participants to attend the educational programme; to discover the feelings that participants experienced when attending the programme and explore what impact the formal education programme has/or will have on the lived experience of having IBD, as perceived by the participant.
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
13/YH/0248
Date of REC Opinion
17 Jul 2013
REC opinion
Favourable Opinion