Results from workshops with patients with Crohn’s disease and ulcerative colitis
| Concepts with the highest rating | Clusters | Examples of statements |
| Crohn’s disease | ||
| Positive attitude | A positive approach to life | I'm relieved I've got my diagnosis so I can do something about it. |
| I am unstoppable | The future is bright, and I will not let myself be ruled by my illness. | |
| Accept and recognition | Acceptance can be difficult | Although I have had my illness for many years, it is only now that I am accepting it. |
| A condition of life | I do not feel that there is anything that can surprise me anymore. | |
| Learn to live with the disease | The better balance I have in my life, the better I feel about my illness. | |
| Losing control | I feel like I'm a number in the system. | |
| Doctors take control | The doctors could do with me whatever they wanted - I was left to the doctors (while I was sick). | |
| Sharing knowledge and experiences in life with Crohn’s disease | Clarification of my situation | Was very affected by fatigue but did what I was supposed to. |
| To meet other people like me | If I had met others like me, I would not have been hiding myself. | |
| Knowledge-sharing | What works for me might work for others. | |
| Part of every day | I have been embarrassed in various situations, including at work. | |
| Ulcerative colitis | ||
| Take responsibility and control over your life | Accept | My focus is on a healthier, more balanced life. I am convinced that it has a positive effect on my life regardless of the effect of the medicine. |
| No worries | I'm not worried about my illness (I do not die of it). | |
| I can do it | I do not let my illness limit me in anything. | |
| Positive experiences | Due my illness and medical history, I take better care of myself. | |
| Openness about the disease | Openness creates strength. | |
| Medication | Side effects | Concerned about long-term drug side effects. |
| The future | I am hoping for a miracle - a cure! | |
| To avoid medication | I get a lot of medicine every day that I would like to be without. | |
| The effect of the medication on the body | We get medication that only relieves symptoms. It does not cure the disease. It is frustrating. | |
| Positive attitudes towards medication | I am very happy with the existing medicines. | |
| Does the medication work? | I worry about whether my medication will continue to work. | |
| Everyday life with ulcerative colitis | To live with the disease | Has been on-off sick for 10 years. |
| Limitations due to the disease | The time spent in hospital I never get back. | |
| Family life | I am a mother who would like to be able to handle it all myself, home baking, etc. | |
| Practical issues | I must always consider in what situation I put myself in. Use of toilet. Transport. | |
| Symptoms | Sore joints and abdominal pain. | |
| Concepts including many statements | Clusters | Examples of statements |
| Crohn’s disease | ||
| Everyday life with Crohn’s disease | Does the medication work? | I worry about whether my medication will continue to work. |
| To live with the disease | Has been on-off sick for 10 years. | |
| Limitations due to the disease | The time spent in hospital I never get back. | |
| Family life | I am a mother who would like to be able to handle it all myself, home baking, etc. | |
| Practical issues | I must always consider in what situation I put myself in. Use of toilet. Transport. | |
| Meeting the hospital | Symptoms | Sore joints and abdominal pain. |
| Good experiences | The nurses are sweet. | |
| Bad experiences | I miss the doctor who has followed me for 30 years and knows my medical history. | |
| Lack of flexibility | I wish some of the meetings could be done electronically. | |
| Relationship to healthcare professionals | Relationships to healthcare professionals. It is important; it’s a positive experience to meet the healthcare professionals. | |
| Lack of interest for wishes from the patients | When I tell from my own experiences to hear if others experience the same thing - the answer is ‘it is individual’ (being shut down). | |
| Worry and thoughts for the present and future | Lack of understanding of the disease | Worries about the future. |
| The family is affected by the disease | My daughter is often worried about me. | |
| Worries | Uncertainty haunts me - when will the disease flare-up. | |
| Ulcerative colitis | ||
| Meeting the hospital | Alternative options | Are there alternatives to endoscopies? Would be nice to get rid of them. |
| The negative meeting | Lack of cooperation between staff - were forgotten when they talked past each other. | |
| The positive meeting | Grateful that my ‘needs’ are recognized. | |
| To create safety | There are no psychologists associated with this disease. It could be a good idea for a teenager who needs one to talk to. | |
| Relationships/family/social life | Vacation limitations | Long travels in the world where the healthcare system is not nearby giving many worries/thoughts every day. |
| Everyday life | Not a day goes by where I do not think about my illness. | |
| Influence on family life | In my family, you are not allowed to say that you do not ‘feel like it’. | |
| Lack of understanding | My illness is being used as an excuse for ‘not wanting to’. | |
| Social events can be challenging | Have had to stay home instead of going to social events. | |
| Openness about my disease | Only after a few years I could speak openly about my illness and ask others for help. | |