The Experiences of Young People with Inflammatory Bowel Disease

Inflammatory Bowel Disease (IBD) is a chronic health condition that is often diagnosed in youth. Living with a chronic condition can have far reaching implications for the patient and for those around them. However, health research tends to focus on the negative aspects of living with a health condition and may overlook the fact that despite adversity, people can and do adjust and can even grow and develop positively through that adversity. The life experiences of young people with inflammatory bowel disease has been examined in two different contexts. The first part is a systematic literature review. Here, family functioning in the context of youth IBD has been examined. Family functioning refers to the levels of conflict and cohesion in families and requires family members to have clear roles. In the face of a chronic illness such as IBD, it is possible that family functioning may be put under pressure. Alternatively, it may be that families are well equipped to deal with stressors such as a member having a chronic illness. A systematic search was conducted, and 18 studies included for review. Studies were of reasonable quality although they were weakest in their recruitment procedures leaving questions about the validity of the results. Overall, the findings of the studies were mixed which means that it is still unclear whether there is a relationship between IBD and family functioning. Some families experienced little disruption when accommodating IBD whereas others did experience poorer family functioning. However, a stronger finding was that family functioning was no worse in families of young people with IBD than in families of healthy children or families of children with other chronic conditions. The second part is a qualitative exploration of post-adversarial growth (PAG) in young people with IBD. PAG refers to a profound personal change in which individuals feel they have positively benefitted from adversity. This can mean different things for different people but can include a new outlook on life, new goals or paths, deeper relationships or positive cognitive changes. Interviews were transcribed and analysed using Template Analysis. Results suggested that young people with IBD did report changes as a result of their illness that were consistent with the concept of PAG. Despite the adversity, they reported deeper relationships, taking back control of their lives from the illness, and positive psychological change. The results suggest that young people can experience PAG. Taken together, the two pieces of work suggest that whilst there are indeed challenges to living with IBD, the picture may not be all negative. Some families are able to cope with the challenge of supporting a member with IBD and young people with IBD are able to experience positive growth.