5.3.1 Living with a long-term condition. A mixed methods exploration of self-management and personal control in 30-40 year olds living with Inflammatory Bowel Disease (322)

Joanne Cooper, Postgraduate Research Student, School of Nursing, Nottingham University, Nottingham, United Kingdom Co authors: Jacqueline Collier, Veronica James & C J Hawkey joanne.cooper@nottingham.ac.uk

Abstract:

Background:

This presents the qualitative phase of an exploratory, sequential mixed method investigation of self-management and personal control in Inflammatory Bowel Disease (IBD). IBD is a collective term for Crohn’s Disease and Ulcerative Colitis. Adjusting to life with IBD involves developing self-management strategies which are linked to perceptions of personal control.

Aim:

Focusing on individuals at a particular life stage (30-40 years), to explore how people perceive their role and the role of others in controlling and managing their IBD.

Methods:

A theoretical, purposive sampling strategy was employed. 24 participants were recruited via Gastoenterology outpatient clinics at a large, inner city NHS Trust. In-depth semi-structured one-to-one interviews were conducted. Data analysis was guided by systematic framework analysis. Analysis of perceptions of personal control was informed by Social Cognitive Theory (SCT).

Results:

SCT was relevant to participants’ descriptions of living with IBD but did not fully explain personal control and self-management. A key finding that emerged was the ‘Living with IBD Self-discrepancy Concept’. Participants describing fewer discrepancies of personal control and self-management, described less of an impact from their IBD.

Discussions:

Although participants described the importance of personal control in managing their IBD, the ability to adapt to frequent discrepancies and uncertainties was a key finding of this research. Participants who were able to reconcile the discrepancies between their ‘current self’ and the person they ‘needed to be for life to be okay’ described less impact of IBD on daily life.

Conclusions:

Individuals living with IBD face frequent uncertainties and inconsistencies when managing their condition. Solely focusing on increasing a sense of personal control may not always be the best approach. Greater understanding of perceptions of self-discrepancies and helping patients adapt to these will help identify issues of up-most importance to patients, and refine the focus of current self-management approaches.

Biography:

I qualified in adult nursing in 1997 and developed a passion for Gastroenterology during my time as a student. Initially I worked on medical and surgical Gastroenterology wards and in 2001 began my role as an Upper Gastrointestinal Nurse Endoscopist at Nottingham City Hospital. This involved carrying out upper gastrointestinal endoscopies and developing a city-wide nurse-led dyspepsia clinic. More recently I have worked as an Inflammatory Bowel Disease Nurse Specialist where I have had the privilege of gaining greater insight into people’s experience of living with this often challenging condition. I am involved in leading a post-registration module focusing on caring for patients with Upper GI disorders and also advise on other gastroenterology modules at the School of Nursing, University of Nottingham. I am also membership secretary for the Midlands Gastroenterological Nurses Society. Since qualification I undertook my Bachelors Degree and Masters in Research Methods and since 2005 gained funding from the Economic and Social Research Council to undertake a full time PhD exploring perceptions of personal control and self-management in IBD.