Table 2 a: types of counselling, distance and types of medical interventions in relation to intersex/dsd; b: helpful and missed aspects in previous counselling experiences.
(a) | ||
|---|---|---|
Adult experts of experience (n = 40) (n = 21 with counselling experiences) | Parents (n = 27) (n = 15 with counselling experiences) | |
N (%) | N (%) | |
Counselling and support | ||
Self-help groups | 19 (90.5) | 14 (93.3) |
Counselling from medical specialists (e.g., endocrinologist, gynaecologist, urologist) | 12 (57.1) | 13 (86.7) |
Multidisciplinary team (MDT) in a reference centre/network | 0 (0.0) | 7 (46.7) |
Psychotherapy | 9 (42.9) | 3 (20.0) |
Psychological counselling | 5 (23.8) | 6 (40.0) |
Peer-to-peer counselling | 4 (19.0) | 2 (13.3) |
Counselling from my physical examiner (P.E.) (Hausarzt) | 3 (14.3) | 2 (13.3) |
Legal advice | 3 (13.6) | 3 (20.0) |
General counselling centre | 0 (0.0) | 1 (6.7) |
Specialised counselling centre | 2 (9.5) | 0 (0.0) |
Distance to obtain counselling (How far did you have to travel?) | ||
<25 km | 3 (14.3) | 3 (20.0) |
<50 km | 4 (19.0) | 1 (6.7) |
Max 100 km | 2 (9.5) | 3 (20.0) |
More than 200 km | 12 (57.1) | 8 (53.3) |
Medical interventions | ||
Hormonal replacement | 26 (65.0) | 7 (25.9) |
Gonadectomy | 24 (60.0) | 6 (22.2) |
External genital surgery | 9 (22.5) | 1 (3.7) |
Internal genital surgery (e.g., vaginoplasty) | 8 (20.0) | 2 (7.4) |
Other (e.g., hysterectomy, biopsy, hernia surgery, gonadal replacement) | 7 (17.5) | 6a (22.2) |
No answer | 4 (10.0) | 3 (11.1) |
(b) | ||
|---|---|---|
Adult experts of experience | Parents | |
(n = 21)b | (n = 15)b | |
N (%) | N (%) | |
Helpful aspects | ||
1. Talking with other persons with an intersex/dsd condition | 17 (81.0) | 9 (60.0) |
2. Talking with other parents of children with intersex/dsd conditions | 8 (38.1) | 14 (93.3) |
3. Understanding and emotional support | 14 (66.7) | 9 (60.0) |
4. Broadening of my thinking | 12 (57.1) | 10 (66.7) |
5. Community, solidarity and overcoming isolation | 12 (57.1) | 8 (53.3) |
6. I have received important medical information. | 8 (38.1) | 8 (53.3) |
7. I have received important information regarding sex and gender development. | 8 (38.1) | 7 (46.7) |
8. Acknowledging my body resp. the body of my child | 9 (42.9) | 4 (26.7) |
9. Supporting my individual development resp. of my child | 8 (38.1) | 6 (40.0) |
10. I have received important legal information. | 8 (38.1) | 3 (20.0) |
11. Support in decision-making | 7 (33.3) | 5 (33.3) |
12. Minimising the pressure to decide (e.g., regarding irreversible medical interventions) | 3 (14.3) | 3 (20.0) |
13. Other reasonsc | 3 (14.3) | 1 (6.7)c |
Aspects missed/wished for | ||
1. Talking with other persons with an intersex/dsd condition | 5 (23.8) | 4 (26.7) |
2. Acknowledging my body resp. the body of my child | 3 (14.3) | 3 (20.0) |
3. Supporting my individual development resp. of my child | 5 (23.8) | 6 (40.0) |
4. Broadening of my thinking | 3 (14.3) | 2 (13.3) |
5. Understanding and emotional support | 3 (14.3) | 4 (26.7) |
6. Community, solidarity and overcoming isolation | 3 (14.3) | 3 (20.0) |
7. Minimising the pressure to decide (e.g., regarding irreversible medical interventions) | 3 (14.3) | 5 (33.3) |
8. I have received important legal information. | 3 (14.3) | 4 (26.7) |
9. I have received important medical information. | 5 (23.8) | 4 (26.7) |
10. I have received important information regarding sex and gender development. | 4 (19.0) | 2 (13.3) |
11. Support in decision-making | 3 (14.3) | 2 (13.3) |
12. Talking with other parents of children with intersex/dsd conditions | 1 (4.7) | 2 (13.3) |
13. Other reasonsd | 3 (14.3) | 2 (13.3)d |
