Table 1 Category system with (translated) sample statements
Category | Description | Sample statement (translated) |
|---|---|---|
Worst experience | ||
Psychological distress | Anxiety or uncertainty about the course or outcome of the illness. | “Fear that the tumour could already have spread, which was not the case though.” |
Indigestion and discomfort during defecation* | Discomfort during defecation (e.g. diarrhoea, incontinence) after primary surgery or stoma reversal and a necessary change in diet. | “permanent diarrhoea” |
Cancer diagnosis | The shock of receiving cancer diagnosis and the fact of being a cancer patient. | “the diagnosis itself!” |
Stoma* | The fact of having a stoma with related impairments. | “carrying a stoma-pouch (detachment)” |
Hospital stay including surgery* | The time of hospital stay including surgical treatment. | „cowardice of the doctors in the clinic, experience to be at someone’s mercy, helplessness” |
Chemotherapy | Chemotherapy with related side-effects. | “chemotherapy” |
Financial burden* | Financial problems or worries caused by cancer diagnosis. | „That I did not find a job afterwards, I am unemployed ever since.” |
Additional illnesses | Additional diseases like comorbidities or recurrence during or after colorectal cancer. | „the fact that metastases recurred” |
Pain* | Any form of pain during the course of the illness. | „unbearable pain“ |
Nothing | No worst experience. | “did not experience any discomfort” |
Social burden | Fear of family or other conflicts in partnership or family caused by the illness. | “worrying for the family; have to carry my wife with her wheelchair to dialysis throughout the whole year” |
Radiotherapy | Radiotherapy with related side-effects. | “radiotherapy” |
Other | Statements not fitting in one of the other categories | “fatigue, grogginess” |
Positive aspects | ||
Change in life priorities | Change of one`s own priorities in life in terms of living life more consciously and relaxed, or changes in lifestyle. | “One appreciates (healthy) everyday life again to a greater extent!” |
Support by physicians/ nurses | The good (medical) treatment by physicians or nurses. | “outstanding care and advice provided by the doctors from the hospital (name omitted)” |
Social support | Support by family, friends, or colleagues as well as unexpected help from others. | “I re-experienced the love of my wife.” |
Good course of cancer | The good course and outcome of the illness. | “being completely cured” |
Gratitude | Being grateful to have survived. | “I am really glad to have regained my physical health. Thanks to Prof. (name omitted)” |
Hope* | Being positive about the expected outcome | “I was convinced to a 100% that I would overcome the illness.” |
Stoma reversal* | The reversal of the stoma. | “having no stoma anymore“ |
Rehabilitation* | To have been on rehabilitation | “having been on rehab” |
Other | Statements not fitting in one of the other categories | “I advise my acquaintances to participate in cancer screening programs.” |
Advice | ||
Fighting spirit | Think positive, fight, never lose hope, and be patient. | “Giving up means loosing!“ |
Cancer screening | Have regular cancer screening. | “Please go to the screening colonoscopy!” |
Change in lifestyle* | Take the disease as an opportunity to adopt a healthier lifestyle. | “Like I have already mentioned: I would advise a healthy diet and physical activity.” |
Confidence in physicians | Trust your physician and follow his/ her instructions. | “Follow the doctors‘ advice!“ |
Openness | Confide in somebody and talk a lot about the illness. | “Talk to your family or friends about your fears!” |
Immediate treatment* | No hesitation in getting treatment right away. | “early surgery” |
Information | Keep calm, get a second opinion, and inform yourself about the illness. | “Look for different surgical options, consider different options; look for less invasive surgical techniques and prefer those!” |
Business as usual | Don`t think too much about the illness, live life in a normal way. | “Continue living as usual!“ |
Rehabilitation* | Go on rehabilitation. | “Definitely go on rehab! This helped me a lot.” |
Acceptance | Accept the illness. | “Accept the disease!“ |
Support group | Visit a support group. | “seeking information among fellow sufferers” |
No advice | It is not possible to give any advice for fellow patients. | “no advice possible because there are huge differences” |
Belief in God | Strengthening in faith. | “Don’t let yourself down, trust in God and your doctor!” |
Self-reflection | Reconsider your life. | - |
Discreteness | Keep your illness as a secret. | - |
Other | Statements not fitting in one of the other categories | “Don’t forget being humble and grateful!” |