Self-efficacy, one's expectations regarding the ability to perform some specific task, was studied prospectively in the adaptation process of stoma patients. One week after surgery, stoma-related self-efficacy was assessed in 59 patients (26 cancer patients and 33 patients with benign diseases) who had undergone intestinal stoma surgery. Twenty-nine items concerning self-efficacy were formulated. Factor analysis with oblique rotation resulted in two factors: a social functioning-related self-efficacy factor and a stoma care-related self-efficacy factor. Psychosocial adjustment was assessed by means of the Psychosocial Adjustment to Illness Scale (PAIS-SR) at 4 and 12 months after surgery. The PAIS-SR renders one global adjustment score and (in this study) five subscores for adjustment to specific life domains: vocational environment, domestic environment, sexual relationship, social environment, and psychological distress. In a multiple regression analysis, the relevance of self-efficacy for later adjustment was determined after partialing out the effects of relevant sociodemographic and medical factors. Strong evidence was found for the important role of self-efficacy in the process of adapting to a stoma; stronger feelings of self-efficacy shortly after the operation predicted fewer psychosocial problems in the course of the first postoperative year. Stoma care-related self-efficacy appears especially important in the first phase after surgery. Social functioning-related self-efficacy explains significant proportions of the variances in PAIS-SR total score and PAIS-SR subscores, in both the short (4 months after surgery) and long runs (12 months after surgery). If patients expect to be able to take care of their stoma, their postoperative adjustment is relatively good. By strengthening patients' self-efficacy, this adaptation process may be accelerated, and the psychological and social burden can be lightened.

A prospective 4-year follow-up study was conducted to compare the psychosocial adjustment process and survival rate of 59 stoma patients with 64 bowel-resected nonstoma patients. Adjustment was assessed at 4 months. 1 year, and 4 years after surgery by the Psychosocial Adjustment to Illness Scale, a self-report questionnaire (PAIS-SR). Analyses of covariance demonstrated that both subgroups experienced the same level of psychosocial problems 4 years after surgery. Interestingly, patients with poor early adjustment scores (4 months after surgery) were at significantly higher risk of dropping out because of death and terminal status during the follow-up period (1 and 4 years postoperatively). The presence of a stoma did not influence the risk rate for dropping out. These results demonstrate the need for prolonged psychosocial guidance of outpatients who have been surgically treated for colorectal cancer or inflammatory bowel disease.

During the last decade strong improvements have been made in the medical care of patients with a digestive tract stoma, particularly with regard to nursing skills and to the quality of collecting material for faecal products. Scientific investigation into the psychosocial adjustment of patients after stoma surgery has intensified as well, giving us indications for quality of life. These developments induced a review of the actual state of affairs in psychological issues. After evaluating the results of psychosocial stoma research, it can be concluded that the technical improvements in stoma care during the past decade did not result in a decline in psychosocial problems after stoma surgery. However, there are some serious problems when interpreting the results of studies in this field of investigation. Stoma surgery is not per se solely responsible for the reported psychosocial problems, first, because many conclusions are based on research studies with poor design and, second, because these studies lack a theoretical framework within which the process of psychosocial adjustment has been measured and explained. This review assesses the most current developments and controversies in this field.

The social position of adolescents is affected negatively by having a chronic digestive disease, in particular chronic liver disease and IBD. Negative consequences occur in education, leisure activities, labour participation, financial situation, partnership and sexuality.

First, we compared the nature of burden of disease (i.e., manifestations of the disease in daily life) in adolescents and young adults with various chronic digestive disorders with controls. After that, we investigated whether burden of disease is associated with difficulties in school and leisure activities of adolescents and young adults with various digestive disorders. For this purpose, we performed a multicenter study in 5 diagnostic groups (total N = 758; ages 12 to 25 years) including inflammatory bowel diseases (IBD), chronic liver diseases, congenital disorders, celiac disease, and food allergy and a population based control group (N = 306) using a self-report questionnaire. Especially adolescents and young adults with a chronic liver disease, IBD, and food allergy were found to experience daily manifestations of their disease. Several disease burden characteristics, of which especially depression, could be identified as important contributors to difficulties in school performance and leisure activities.

Coping strategies were compared across adolescents and young adults with several chronic digestive disorders and healthy peers, and across age groups. Subsequently, the impact of coping on performance in school and leisure activities was investigated. Participants were adolescents and young adults (age 12 to 25 years) suffering from inflammatory bowel diseases (IBD), chronic liver diseases, congenital diseases, coeliac disease or food allergy (total n=521) and healthy controls (n=274). For comparison reasons, a generic coping measuring instrument was employed: the shortened version of the Coping Inventory for Stressful Situations (CISS-21). The CISS-21 assesses three meta coping strategies: taskoriented, emotion-oriented and avoidance coping. Comparisons between several groups only revealed less use of coping strategies in the youngest adolescents. No differences were found among diagnostic groups, nor between diagnostic groups and control group. Coping was found to be related to school and leisure activities of adolescents and young adults with chronic digestive disorders.

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