Beliefs about personal control and self-management in 30–40 year olds living with Inflammatory Bowel Disease: A qualitative study

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Abstract

Background

Inflammatory Bowel Disease is a collective term for two distinct long term conditions: Ulcerative Colitis and Crohn's disease. There is increasing emphasis on patients taking greater personal control and self-management of this condition, reflecting earlier research into the management of chronic illness. Nurses play a pivotal role in this process, yet how optimal personal control is self-assessed and self-managed in Inflammatory Bowel Disease is poorly understood.

Objectives

This study set out to explore beliefs about personal control and self-management of Inflammatory Bowel Disease. It focused on the role of physical, psychological and socio-economic factors within the individual's life experience.

Design

A qualitative approach was used comprising 24, one-to-one, semi-structured interviews with participants aged 30–40 years. Participants with a histological diagnosis of Inflammatory Bowel Disease for at least 12 months were eligible and recruited by gastrointestinal specialist staff from outpatient clinics at a large National Health Service Trust in the United Kingdom. Interviews were transcribed verbatim. Data analysis was informed by existing theories of personal control and used the ‘systematic framework analysis’ approach.

Results

In addition to existing theories of personal control, self-discrepancy theory helped to explain how people viewed the control and self-management of Inflammatory Bowel Disease. One main theme emerged from the findings: ‘Reconciliation of the self in IBD’, this was supported by three sub-themes and eight basic themes. Some participants found that being unable to control and predict the course of their condition was distressing, however for others this limited control was not viewed as a negative outcome. Being able to share control of IBD with specialist health care staff was beneficial, and participants stated that other priorities in life were as equally important to manage and control. A key barrier to ensuring greater personal control and self-management was a lack of knowledge and awareness by non-specialist health care staff, employers and the wider society.

Conclusions

Nurses involved in the care of individuals with Inflammatory Bowel Disease should support and prepare patients for the discrepancies and uncertainties of living with the condition. Greater training about Inflammatory Bowel Disease is recommended, specifically for non-specialist health care staff and employers.

Introduction

The impact of chronic illness on the individual and society is the subject of increasing attention within international health policy and health service recommendations (AIHW, 2008, Department of Health, 2005, WHO, 2005). In the United Kingdom it is estimated that approximately 17.5 million adults suffer from at least one long term condition, a figure which is expected to rise by 23% by 2026 (DH, 2001). Clinical research and health policy support the benefits of promoting choice and maximum individual control, including the use of effective self-management strategies (Department of Health, 2005, HM Government, 2007, Lorig and Holman, 2003).

Section snippets

Inflammatory Bowel Disease

IBD is a collective term for two life-long inflammatory disorders of the gastrointestinal tract: Ulcerative Colitis (UC) and Crohn's Disease (CD). Similar to other long term conditions, sufferers commonly experience periods of exacerbation and remission. These are characterised by symptoms such as rectal bleeding, urgency, diarrhoea, loss of appetite, abdominal pain, fatigue and for some, extra-intestinal manifestations including those affecting the skin, joints and eyes (Vermeire and

Understanding personal control beliefs

Decades of research in sociology and psychology have identified that a sense of personal control is important to psychological functioning and a robust predictor of physical and mental well-being (Skinner, 1996). The design of this study was informed by two common constructs of personal control: multi-dimensional health locus of control (MHLoC) (Wallston et al., 1978); and self-efficacy (Bandura, 1977).

Aim

The overall aim was to explore participants’ beliefs about their role and the role of others in controlling and managing their condition. Participants were encouraged to discuss their strategies of self-management, or what ‘things they did’ as part of managing their condition. The study sought to explore participants’ perspectives of themselves before and since diagnosis, the impact that having the condition had on relationships with others and their views about quality of life.

Design

This phase of

Results

One main theme was identified from the interview data: ‘Reconciliation of the self in IBD’. This was based on three sub-themes and eight basic themes (Fig. 2).

Discussion

This study provides new knowledge about how people aged 30–40 years view the control and self-management of IBD. Two well recognised theories of personal control, MHLoC (Wallston et al., 1978) and self-efficacy (Bandura, 1977, Bandura, 1995) provided effective sensitising constructs for this exploratory qualitative study. Two sources of self-efficacy (performance accomplishments and physiological feedback) (Bandura, 1995), and references to luck, chance and trust in health care professionals

Strengths and limitations of the study

To the authors’ knowledge, this represented the first qualitative exploration of personal control beliefs in IBD and their relationship to self-management strategies.

While existing measures of personal control may have captured the ‘level’ of personal control reported by participants, data analysis identified the process of reconciling ‘self-discrepancies’ (Higgins, 1987) in personal control beliefs. However, while data saturation was gained within this sample of 24 participants, these

Implications for clinical practice

By identifying aspects of life that have the greatest level of self-discrepancy for patients with IBD, it is recommended that nurses devise plans of support and self-management according to individual need and life priorities. In support of existing research (Robinson, 2004, Rogers et al., 2005), services aimed at encouraging directed self-management in IBD require the essential elements of mutual acknowledgement, continuity of care, embracing experiential knowledge and the provision of

Acknowledgments

We are indebted to the individuals who freely gave their time to participate in this research. Sincere thanks also to Dr K. Teahon, Dr A. Jawhari, Dr R. Long and IBD clinical nurse specialists who provided support in recruiting participants to this study.
Conflict of interest

None declared.
Funding

This work was funded by Economic and Social Research Council (+3 PhD Studentship), by School of Nursing, University of Nottingham, and by Institute of Clinical Research, University of Nottingham.
Ethical

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