Table 5 Summary of main findings
Main codes | Sub codes | Main results |
|---|---|---|
Experiences with the disease | Social level | Patients partly retire from social activities: restrictions due to incalculable course of the disease, difficulties in planning of social and leisure activities, lack of understanding from other people, taboo topic, embarrassing to talk about |
Physical level | Wide range of symptoms: gastrointestinal (pain, diarrhea, incontinence, imperative stool urgency etc.), extraintestinal (e.g. skin), general exhaustion, fatigue | |
Psychological level | Impaired quality of life (especially during flare-ups): feeling of insecurity, fear of worsening/upcoming flare-up, helplessness (missing guidance by professionals/treating physicians); despondency/dejection, depressive episodes | |
Perception of the program | Positive aspects and satisfaction | Provided material (e.g. CD, handouts), combination of theoretical lessons and practical instructions, empathetic and competent staff members, exchange with other persons affected appeared beneficial |
Negative aspects and suggestions for improvement | Integration of program elements into everyday life was partly difficult due to other commitments, participation could lead to additional stress | |
Integration of the program/techniques into daily life | Useful aspects | Elements requiring little time, preparation and costs are easy to integrate into (family) life, therefore had a higher chance of being continued; reserving a specific timeslot in daily routine increases chance of implementation (ritualized performance) |
Problems/hurdles | Lack of time due to family and work commitments, difficulties in getting started with exercises (e.g. lack of motivation), changes in daily routines have an impact on other family members | |
Integration of techniques | Multiple use of techniques: primarily relaxation and breathing exercises, also nutrition, phytotherapy and physical exercise | |
Impact of the program/changes in daily life | General tendency of perception of positive changes (occurrence and extent case-specific) | |
Behavioral | More mindfulness in handling the own body, improvement of stress management, change in nutrition and exercise behavior, use of self-help strategies | |
Cognitive | Improvement in disease acceptance, better knowledge of disease, change in attitude, productive coping with problems | |
Emotional | Increased self-confidence in dealing with the disease | |
Social | Improved quality of life, increased participation in social activities | |
Physical | Improvements related to bowel movements, pain and fatigue (in some cases fewer physical complaints) | |