Towards a Sociology of Inflammatory Bowel Disease (IBD) Dr. Cassie Ogden University of Chester

What is IBD? Inflammatory Bowel Disease (IBD) is a chronic disease of the digestive system that can effect children of any age. IBD causes symptoms such as diarrhoea, fatigue, abdominal cramps and loss of appetite. Patients experience periods of remission and relapse of the disease throughout their lives. A variety of treatments available that encourage remission. As well as the physical consequences, children can be affected both psychologically and socially by the disease (Engstrom, 1992).

A Sociology of IBD? Disability theory (the social model). Good potential although also need to sociologically analyse the experience of impairment. Sociology of the body seeks to understand links between biology and culture and work towards an embodied understanding of reality.

The Quantitative Approach Health related Quality of Life (QoL) can be described as a measure of how a person’s health, disease or impairment affects the quality of their physical, mental, cultural, environmental and economic aspects of living (Ferry, 1999). A QoL instrument was culturally adapted and validated for use in the UK (IMPACT-III (UK)). - IMPACT-III (UK) can be used by health care professionals to measure the psychosocial well being of their patients with IBD alongside their physical needs.

What does IMPACT-III (UK) measure and is it sociological? IMPACT III (UK) measures psychosocial well being of children (aged 8-17) with IBD through the following domains: IBD symptoms Energy Concerns/worries about living with IBD Embarrassment Body Image.

The Qualitative Approach The narrative inquiry technique (NI) is a medium through which to present and reflect upon life experiences (Goodley, et al., 2004). Advocates of the approach believe that telling stories allows other people’s experiences to be understood more clearly. Narrative interviews were conducted with a boy with IBD aged 11 and his mother and a girl with IBD aged 13.

Quotes from the narratives I had noticed that some of the puss had been weeping from my abscess a little. It made me feel a little bit dirty…Mum and Dad are trying to get me to go out but they don’t know how embarrassing it would be if I leaked. Katey Belton (aged 13) To help me cope with having the disease I take a mixed approach really. Firstly, I don’t try to hide my IBD (this is why I have told some of my closest friends). At the same time I don’t go around bragging about it like I am someone special! I think by telling everyone that I had IBD would make it harder in the long run and might mean that certain nasty people would bully me.’ Nathan

A sociological exploration? Stories place the individual in the context of the social environment and allow people to realise the implications of both the disease and treatment on their lives. The embodied nature of the individuals’ lives and the disabling attitudes of others are evident within the stories. The stories act as a tool for others outside the health care arena to understand the experiences of this patient group further.

Conclusions It could be argued that IMPACT-III (UK) could be utilised practically in a clinical setting (although potential to pathologise individuals with IBD further). NI is perhaps better at exploring individual experiences within a social context (but is not a practical clinical tool). Perhaps both approaches contribute to developing a sociological understanding of IBD? The complexity of living and coping with IBD is clearly illustrated through both approaches and with further development of sociological theory the inclusion and improved psychosocial well being for children with IBD, may eventually be realised.