Table 2 Categorization of free-text responses with example statements

Q9. Reasons for CAM use

(n = 13, N = 198)

Specification of improved physical well-being (n = 12)

“To counteract strong hot flushes.”

Refraining conventional treatment (n = 1)

“Did not want conventional treatment because I didn’t want any more poison in my body.”

Q10. Benefits of CAM

(n = 31, N = 198)

Specification of physical and emotional well-being (n = 14)

“Less pain and better mobility.”

Some CAM of value, some not (n = 2)

“Have experienced many side-effects from the antiestrogen treatment but my sexual life has not been affected, my mucous membranes are not dry. Because of the primrose oil? Not of any use: The acupuncture that even hurt sometimes.”

I do not know (yet) (n = 15)

“Difficult to know what it would have been like without [CAM]. If it had any effect or not.”

Q13. Was CAM worth the money?

(n = 54, N = 198)

CAM use significant in life (n = 15)

“I got a new life. Even if I would die tomorrow, it would have been worth it.”

Improvement of psychological, physical or spiritual well-being (n = 24)

“Yoga makes me feel at peace and improves strength and flexibility and gives me a sense of having power.”

Some CAM of value, some not (n = 2)

“The chiropractic practice helped me for some time with my wryneck, but the antioxidants were not worth the money.”

Wish for economical support for CAM use (n = 6)

“My economy cannot take anti-cancer foods in the long run.”

I do not know (yet) (n = 7)

“Too early to evaluate.”

Q14. Satisfaction with CAM use

(n = 31, N = 198)

Specification of effect (n = 12)

“Did not notice the benefit before I stopped taking this mistletoe extract. Then I started again.”

I don’t know (yet) (n = 14)

“Difficult to say as a lay person.”

CAM use not in association to cancer (n = 5)

“I have not used CAM for cancer.”

Q15a. Topic of discussion with cancer care professionals (n = 49, N = 79)

Use of specific method was encouraged (n = 12)

“The doctor encouraged me to use acupuncture.”

Ok to use (n = 10)

“The doctor thought it was totally ok.”

Patient asked to take own responsibility for use (n = 10)

“Not his field but did not discourage me [from CAM use].”

Recommendation to refrain usage (incl risk of interaction) (n = 17)

“The doctor said no to everything except what the Oncology department offered.”

Q15b. If discussion, were you satisfied?

(n = 27, N = 79)

Specification of discussion about specific method (n = 6)

“Got an answer to my vitamin D in my blood. In the end, I stopped taking vitamin D since the test showed too much.”

Lack of knowledge about CAM among health care providers (n = 7)

“Without nuance, uninformed and non-empathic. You don’t have to recommend complementary methods if you are so afraid of them before time has passed and additional 20 research results have proven benefits. But you could report about current research and where one can find research reports. I have been asking for this but have not gotten any help.”

Wish for open attitude and competent answers (n = 14)

“There is research in the rest of the western world that is genuine. /…/ Swedish doctors/nurses would benefit from being open to alternatives.”

Q15c. Why not discussed?

(n = 77, N = 119)

Expected negative answer (n = 18)

“Everyone knows about the lack of knowledge [about CAM] among doctors and their out-of-date attitudes regarding alternatives that do not constitute medicines or surgery. Unnecessary when one needs their support and not their irritation and skeptical attitude.”

No reason to discuss (n = 44)

“The staff has the attitude: If you think it helps, then…”

Nobody asked (n = 8)

“I have not gotten the question.”

Lack of time or continuity (n = 7)

“Lack of time and lack of interest [from providers].”

Q16. Sources of information about CAM

(n = 26, N = 198)

Own experience and interest (n = 15)

“Big interest in my whole life.”

Literature, lectures, courses, patient organizations (n = 9)

“Books like: Anti-cancer, Are Waerland, Maesegården.”

Other therapists (n = 2)

“My personal trainer.”

Q19. View on the role of conventional health care in relation to providing some CAM

(n = 89, N = 198)

Important with evidence, competence and quality (n = 42)

“Good with holistic perspectives and sound scientific view on these methods. Otherwise one easily goes to quacks.”

Suggestion of method and/or indication (n = 34)

“Important to offer all help that supports the fighting of cancer, especially considering all difficult hospital visits.”

As provider of information on CAM (n = 10)

“Tell me what there is, and I can make the decision myself.”

Wish for treatment diversity (n = 3)

“Right now, there is only one alternative. There needs to be options.”