Table 1 Results from the open-ended question “Are there other ways to involve relatives in the treatment process, which should be offered?”. All codes/terms presented were used by 10 or more participants. Multiple codes/terms could be given per participant
Categories | n | Codes/terms | Representative quotes |
|---|---|---|---|
Information in general, including all aspects of adenomyosis/endometriosis | 206 | Information, information in general | Information and increased knowledge that makes it easier to be supportive as a relative A lot more information about the disease in order for relatives to understand what the patients are facing |
Involvement of partner during consultations (with doctor, nurse or endometriosis nurse) | 52 | Presence of relatives/significant others/partners, involving relatives | To be able to attend consultations to get information on what I can do as a partner to make things better or more comfortable Conversation with a nurse on “how to live with an endo-patient” |
Support groups for relatives | 34 | Support groups, groups for relatives, courses for relatives | Groups and information specifically for relatives Course/conversation on how to best take care of the patient and the relationship |
Written information tailored to relatives needs | 77 | Written information/brochure/booklets for relatives | Information booklets with easily accessible relevant information |
Video information tailored to relatives needs | 59 | Video/facetime/webinar for relatives | Information videos meant for relatives A basic video about endometriosis to make it easier to understand |
Sex therapy for couples | 12 | Sex therapy, sexologist | Option of sex therapy could be helpful since sex life and intimacy may be affected Consider sex therapy since talking about intimacy problems is not easy for everyone |
Easily accessible contact information to health care providers | 13 | Contact, help, ask questions, communication | The opportunity to talk to healthcare professionals about the situation/patient, be able to ask questions and get all the information you need Opportunities for chat communication with a nurse with a short response time |
Other/not classified | 17 |