Table 3.
Domains, themes and needs. Needs identified by participants have been summarised in the form of a statement, beginning with 'I need…'. ‘n’: the number of participants who mentioned the need (from a total of 131).
| Domain | Theme | Need (number of respondents) |
|---|---|---|
| 1.0 Health n = 128 | 1.1 Access | I need my healthcare to not be financially burdensome. (n = 90) |
| I need shorter wait times for the public system. (n = 16) | ||
| I need more specialists for endometriosis. (n = 13) | ||
| I need endometriosis surgeries be classified as nonelective. (n = 8) | ||
| I need local access to endometriosis care. (n = 4) | ||
| I need a centralised centre for my all my endometriosis care needs. (n = 4) | ||
| 1.2 Quality of Care | I need my health practitioners to be better informed about endometriosis. (n = 58) | |
| I need allied health, psychology and holistic health practices to be actively included in my healthcare. (n = 46) | ||
| I need my doctor to provide me with information about endometriosis and to make a management plan for the future. (n = 45) | ||
| I need more effective treatment, with fewer side effects. (n = 41) | ||
| I need faster diagnosis and appropriate referrals. (n = 33) | ||
| I need more good research to be done on endometriosis. (n = 23) | ||
| 1.3 Quality of Interaction | I need to be understood and listened to by health practitioners. (n = 60) | |
| I need to lead the decisions regarding my health. (n = 11) | ||
| I need endometriosis to be considered as a diagnosis, even if I am young. (n = 11) | ||
| I need to know about all options for my future fertility at diagnosis, regardless of age or life stage. (n = 7) | ||
| I need healthcare practitioners to be familiar and comfortable with trans, nonbinary and gender diverse peoples. (n = 2) | ||
| 2.0 Home n = 66 | 2.1 Daily Symptom Management | I need help with my sex life. (n = 21) |
| I need access or education regarding non‐pharmaceutical pain relief, like hot water bottles, TENS machines, or exercise. (n = 19) | ||
| I need to be able to follow a diet that helps with my endometriosis and know what that diet is for me. (n = 6) | ||
| I need access to legal cannabis. (n = 6) | ||
| I need products that make my life easier. (n = 2) | ||
| 2.2 Support at Home | I need support and education available for the people that support me. (n = 29) | |
| I need to be understood and listened to by my partner and/or my family. (n = 14) | ||
| I need assistance with daily activities at home. (n = 4) | ||
| 3.0 Work n = 103 | 3.1 Support at Work/School | I need my employer/educator to be better informed about endometriosis. (n = 55). |
| I need my employer/educator to be more flexible with workload and deadlines. (n = 44) | ||
| I need my employer/educator to not discriminate against me because of my endometriosis. (n = 30) | ||
| I need more sick leave available to me. (n = 28) | ||
| I need my place of work/education to have appropriate facilities for me. (n = 8) | ||
| 3.2 Systematic Support | I need the government to class endometriosis as a disability. (n = 36) | |
| I need to find employment that does not make my endometriosis worse. (n = 4) | ||
| 4.0 Society n = 105 | 4.1 Understanding and Awareness | I need public education, awareness and understanding. (n = 64) |
| I need public education initiatives for endometriosis and other gynaecological conditions to be talked about in high schools. (n = 32) | ||
| I need a centralised access point for information that is up to date, accurate, and consumable. (n = 31) | ||
| I need there to be less stigma and taboo around periods. (n = 5) | ||
| I need access to support groups, and to talk to other people with endometriosis. (n = 9) | ||
| 4.2 Facilities | I need more public facilities and to be able to access them. (n = 3) |