The social position of adolescents and young adults with chronic digestive disorders

Abstract

A chronic digestive disorder can be accompanied by -sometimes embarrassing- symptoms and complaints, such as pain, lack of energy, flatulency or incontinence, which can affect the social position of patients. In addition, diet commitments, or worries about toilet facilities can have a serious impact on social activities. The present study was conducted to provide a basis for preventive interventions in order to support young patients in their development with a maximum of equal possibilities in society. Central to this thesis is the impact of being diagnosed with a chronic digestive disorder, such as an inflammatory bowel disease (IBD), chronic liver disease, congenital digestive disorder, coeliac disease or food allergy, on the social position of adolescents and young adults. Secondly, it was aimed to investigate whether the type of disease and disease burden characteristics imply risk factors for possible difficulties in the social position. In addition, the contribution of coping was studied. The study was conducted within a theoretical framework (based on the Disablement process model of Jette and Verbrugge, 1994) which is presented in chapter one. On the basis of this model, the following research questions formed the starting-point of this thesis: 1) Do various chronic digestive disorders, i.e. IBD, chronic liver diseases, congenital digestive disorders, coeliac disease and food allergy, have a negative impact on the social position of adolescents and young adults? Which specific aspects of the social position are negatively affected by a chronic digestive disorder? 2) How can the burden of a chronic digestive disorder in adolescents and young adults be described, in terms of daily manifestations, compared to population controls? 3) Does burden of disease constitutes a risk factor for school performance and leisure activities of adolescents and young adults with chronic digestive disorders? 4) Does burden of disease constitutes a risk factor for the labour market position of young adult patients with chronic digestive disorders? 5) Do coping strategies differ between several diagnostic groups and population controls? Do they differ between various age groups? 6) Does the use of coping strategies contribute to school performance and leisure activities of adolescents and young adults with chronic digestive disorders? In total 758 patients, categorized in five diagnostic groups, and 306 population-based controls in the age of 12 to 24 years participated in the study. Details on the background of this study, on the recruitment procedures for patients and controls and on the measurement methods can be found in chapter one. The research questions are successively studied in the following chapters. In addition, one chapter pays attention to the factor structure of the Coping Inventory for Stressful Situations (CISS-21) because it was used in a younger target group than it originally was developed for. Finally, chapter seven discusses the main results. In this chapter, a strength and weakness analysis of this study is given as well, followed by a summary of the most significant conclusions. The chapter closes with recommendations for physicians, for patients and their parents, as well as for future research.