| Group of participants categories and subcategories . | Persons concerned . | Parents . | Experts in the field . | Total . |
|---|---|---|---|---|
| Question: Which issues regarding intersex/dsd do you consider to be associated with the most conflicts? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Ethics | ||||
| 1.1 State or other controls | 0 | 0 | 1 | 1 |
| 1.2 Decision-making for children | 1 | 2 | 7 | 10 |
| 1.3 Participation | 0 | 0 | 1 | 1 |
| 1.4 Trust (eg, “misinformation”) | 1 | 1 | 1 | 3 |
| 2 (Medical) treatment | ||||
| 2.1 CAH | 0 | 0 | 1 | 1 |
| 2.2 Surgical interventions | 1 | 4 | 9 | 14 |
| 2.3 Timing | 0 | 1 | 0 | 1 |
| 2.4 Treatment practices | 1 | 0 | 7 | 8 |
| 3 Psyche and social environment | ||||
| 3.1 Closest reference persons (eg, “overweighting the issue intersex in the everyday life of a family with an intersex child”) | 4 | 1 | 2 | 7 |
| 3.2 Gender identity/role | 0 | 0 | 4 | 4 |
| 3.3 Openness (eg, “taboo vs openness”) | 0 | 1 | 2 | 3 |
| 4 Society | ||||
| 4.1 General public (eg, “public perception”) | 1 | 1 | 1 | 3 |
| 4.2 Norms/law | 5 | 0 | 5 | 10 |
| 5 Residual category | ||||
| 5.1 Lack of knowledge | 1 | 0 | 0 | 1 |
| 5.2 Life-span perspective (eg, “development in puberty”) | 1 | 0 | 1 | 2 |
| 5.3 Political correctness | 0 | 0 | 1 | 1 |
| Total | 16 | 11 | 43 | 70 |
| Question: Which decisions regarding intersex/dsd do you consider to be most difficult? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Development | ||||
| 1.1 Attitude of the parents (eg, “aptitude to withstand the ‘atypical’”) | 1 | 1 | 3 | 5 |
| 1.2 Choice of partner | 0 | 0 | 1 | 1 |
| 1.3 Identity (eg, “gender of rearing”) | 3 | 2 | 12 | 17 |
| 1.4 Normality vs specificity (eg, “What are ‘normal’ difficulties and what is caused by the diagnosis?”) | 0 | 1 | 0 | 1 |
| 2 Medical treatment | ||||
| 2.1 Choice of physician | 0 | 1 | 0 | 1 |
| 2.2 Cost issues | 0 | 0 | 1 | 1 |
| 2.3 Decisions on treatment | 1 | 2 | 3 | 6 |
| 2.4 Hormone therapy | 1 | 1 | 0 | 2 |
| 2.5 Education of the patient | 0 | 1 | 0 | 1 |
| 2.6 Surgery | 1 | 3 | 9 | 13 |
| 3 Social environment | ||||
| 3.1 Education | 0 | 1 | 1 | 2 |
| 3.2 Openness | 0 | 1 | 1 | 2 |
| 3.3 Stigma (ie, “Processing that something is ‘wrong’ with the child—enduring, recognizing, observing, respecting, appreciating, accepting”) | 1 | 0 | 0 | 1 |
| 4 Residual category | ||||
| 4.1 Abortion | 0 | 1 | 0 | 1 |
| 4.2 Nondecision (ie, “Is the decision to not decide anything a good decision?”) | 0 | 1 | 0 | 1 |
| 4.3 Openness | 0 | 0 | 1 | 1 |
| Total | 8 | 16 | 32 | 56 |
| Question: In the case of which decisions concerning intersex/dsd is—against the background of your own personal experience—most help needed? | ||||
| n = 6 | n = 5 | n = 17 | ||
| 1 Dealing with intersex in everyday life | ||||
| 1.1 Acceptance | 2 | 0 | 1 | 3 |
| 1.2 Gender (eg, “in deciding which gender identity is livable”) | 0 | 0 | 7 | 7 |
| 1.3 Self-esteem (eg, “to withstand adjustment pressure”) | 1 | 0 | 1 | 2 |
| 1.4 Sexuality | 0 | 0 | 2 | 2 |
| 1.5 Talking about diverse sex development | 0 | 0 | 4 | 4 |
| 2 Life-span perspective | ||||
| 2.1 Birth | 0 | 0 | 1 | 1 |
| 2.2 Choice of partner | 0 | 0 | 1 | 1 |
| 2.3 Diagnosis | 0 | 1 | 1 | 2 |
| 2.4 Early childhood | 0 | 0 | 2 | 2 |
| 2.5 Puberty | 0 | 1 | 0 | 1 |
| 3 Medical and psychosocial issues | ||||
| 3.1 Interventions and treatment | 5 | 3 | 6 | 14 |
| 3.2 Medical care services (eg, “navigation through the health care system”) | 1 | 0 | 1 | 2 |
| 4 Residual category | ||||
| 4.1 Juridical issues | 1 | 0 | 0 | 1 |
| 4.2 Timing (ie, “when postponing decisions”) | 0 | 0 | 1 | 1 |
| Total | 10 | 5 | 28 | 43 |
| Question: Which issues regarding intersex/dsd do you consider to be associated with the most research and knowledge gaps? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Medical science | ||||
| 1.1 Cerebral gender differences | 0 | 0 | 1 | 1 |
| 1.2 Diagnostics | 1 | 1 | 0 | 2 |
| 1.3 Etiology | 2 | 0 | 0 | 2 |
| 1.4 Fertility | 0 | 1 | 0 | 1 |
| 1.5 Progress (ie, “How can we move forward in medicine?”) | 1 | 0 | 0 | 1 |
| 1.6 Risk of degeneration | 0 | 4 | 1 | 5 |
| 2 Quality of care | ||||
| 2.1 Effect of psychosocial support | 0 | 1 | 2 | 3 |
| 2.2 Influencing factors on outcome | 0 | 1 | 2 | 3 |
| 2.3 Long-term outcome | 1 | 5 | 4 | 10 |
| 2.4 Care of older patients | 0 | 0 | 1 | 1 |
| 3 Society and gender | ||||
| 3.1 Dealing with intersex/dsd | 2 | 0 | 4 | 6 |
| 3.2 Education | 1 | 0 | 2 | 3 |
| 3.3 Gender development (eg, “development and prognosis for the development of the psychological gender”) | 0 | 1 | 4 | 5 |
| 3.4 Historical appraisal (ie, “intersex in the Nazi period”) | 0 | 0 | 1 | 1 |
| 4 Residual category | ||||
| 4.1 Advantages (ie, “How does a system/the society ‘benefit’ from variance/variation/diversity?”) | 0 | 0 | 1 | 1 |
| 4.2 Hypospadias | 0 | 0 | 1 | 1 |
| 4.3 Puberty | 0 | 0 | 1 | 1 |
| Total | 8 | 14 | 25 | 47 |
| Group of participants categories and subcategories . | Persons concerned . | Parents . | Experts in the field . | Total . |
|---|---|---|---|---|
| Question: Which issues regarding intersex/dsd do you consider to be associated with the most conflicts? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Ethics | ||||
| 1.1 State or other controls | 0 | 0 | 1 | 1 |
| 1.2 Decision-making for children | 1 | 2 | 7 | 10 |
| 1.3 Participation | 0 | 0 | 1 | 1 |
| 1.4 Trust (eg, “misinformation”) | 1 | 1 | 1 | 3 |
| 2 (Medical) treatment | ||||
| 2.1 CAH | 0 | 0 | 1 | 1 |
| 2.2 Surgical interventions | 1 | 4 | 9 | 14 |
| 2.3 Timing | 0 | 1 | 0 | 1 |
| 2.4 Treatment practices | 1 | 0 | 7 | 8 |
| 3 Psyche and social environment | ||||
| 3.1 Closest reference persons (eg, “overweighting the issue intersex in the everyday life of a family with an intersex child”) | 4 | 1 | 2 | 7 |
| 3.2 Gender identity/role | 0 | 0 | 4 | 4 |
| 3.3 Openness (eg, “taboo vs openness”) | 0 | 1 | 2 | 3 |
| 4 Society | ||||
| 4.1 General public (eg, “public perception”) | 1 | 1 | 1 | 3 |
| 4.2 Norms/law | 5 | 0 | 5 | 10 |
| 5 Residual category | ||||
| 5.1 Lack of knowledge | 1 | 0 | 0 | 1 |
| 5.2 Life-span perspective (eg, “development in puberty”) | 1 | 0 | 1 | 2 |
| 5.3 Political correctness | 0 | 0 | 1 | 1 |
| Total | 16 | 11 | 43 | 70 |
| Question: Which decisions regarding intersex/dsd do you consider to be most difficult? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Development | ||||
| 1.1 Attitude of the parents (eg, “aptitude to withstand the ‘atypical’”) | 1 | 1 | 3 | 5 |
| 1.2 Choice of partner | 0 | 0 | 1 | 1 |
| 1.3 Identity (eg, “gender of rearing”) | 3 | 2 | 12 | 17 |
| 1.4 Normality vs specificity (eg, “What are ‘normal’ difficulties and what is caused by the diagnosis?”) | 0 | 1 | 0 | 1 |
| 2 Medical treatment | ||||
| 2.1 Choice of physician | 0 | 1 | 0 | 1 |
| 2.2 Cost issues | 0 | 0 | 1 | 1 |
| 2.3 Decisions on treatment | 1 | 2 | 3 | 6 |
| 2.4 Hormone therapy | 1 | 1 | 0 | 2 |
| 2.5 Education of the patient | 0 | 1 | 0 | 1 |
| 2.6 Surgery | 1 | 3 | 9 | 13 |
| 3 Social environment | ||||
| 3.1 Education | 0 | 1 | 1 | 2 |
| 3.2 Openness | 0 | 1 | 1 | 2 |
| 3.3 Stigma (ie, “Processing that something is ‘wrong’ with the child—enduring, recognizing, observing, respecting, appreciating, accepting”) | 1 | 0 | 0 | 1 |
| 4 Residual category | ||||
| 4.1 Abortion | 0 | 1 | 0 | 1 |
| 4.2 Nondecision (ie, “Is the decision to not decide anything a good decision?”) | 0 | 1 | 0 | 1 |
| 4.3 Openness | 0 | 0 | 1 | 1 |
| Total | 8 | 16 | 32 | 56 |
| Question: In the case of which decisions concerning intersex/dsd is—against the background of your own personal experience—most help needed? | ||||
| n = 6 | n = 5 | n = 17 | ||
| 1 Dealing with intersex in everyday life | ||||
| 1.1 Acceptance | 2 | 0 | 1 | 3 |
| 1.2 Gender (eg, “in deciding which gender identity is livable”) | 0 | 0 | 7 | 7 |
| 1.3 Self-esteem (eg, “to withstand adjustment pressure”) | 1 | 0 | 1 | 2 |
| 1.4 Sexuality | 0 | 0 | 2 | 2 |
| 1.5 Talking about diverse sex development | 0 | 0 | 4 | 4 |
| 2 Life-span perspective | ||||
| 2.1 Birth | 0 | 0 | 1 | 1 |
| 2.2 Choice of partner | 0 | 0 | 1 | 1 |
| 2.3 Diagnosis | 0 | 1 | 1 | 2 |
| 2.4 Early childhood | 0 | 0 | 2 | 2 |
| 2.5 Puberty | 0 | 1 | 0 | 1 |
| 3 Medical and psychosocial issues | ||||
| 3.1 Interventions and treatment | 5 | 3 | 6 | 14 |
| 3.2 Medical care services (eg, “navigation through the health care system”) | 1 | 0 | 1 | 2 |
| 4 Residual category | ||||
| 4.1 Juridical issues | 1 | 0 | 0 | 1 |
| 4.2 Timing (ie, “when postponing decisions”) | 0 | 0 | 1 | 1 |
| Total | 10 | 5 | 28 | 43 |
| Question: Which issues regarding intersex/dsd do you consider to be associated with the most research and knowledge gaps? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Medical science | ||||
| 1.1 Cerebral gender differences | 0 | 0 | 1 | 1 |
| 1.2 Diagnostics | 1 | 1 | 0 | 2 |
| 1.3 Etiology | 2 | 0 | 0 | 2 |
| 1.4 Fertility | 0 | 1 | 0 | 1 |
| 1.5 Progress (ie, “How can we move forward in medicine?”) | 1 | 0 | 0 | 1 |
| 1.6 Risk of degeneration | 0 | 4 | 1 | 5 |
| 2 Quality of care | ||||
| 2.1 Effect of psychosocial support | 0 | 1 | 2 | 3 |
| 2.2 Influencing factors on outcome | 0 | 1 | 2 | 3 |
| 2.3 Long-term outcome | 1 | 5 | 4 | 10 |
| 2.4 Care of older patients | 0 | 0 | 1 | 1 |
| 3 Society and gender | ||||
| 3.1 Dealing with intersex/dsd | 2 | 0 | 4 | 6 |
| 3.2 Education | 1 | 0 | 2 | 3 |
| 3.3 Gender development (eg, “development and prognosis for the development of the psychological gender”) | 0 | 1 | 4 | 5 |
| 3.4 Historical appraisal (ie, “intersex in the Nazi period”) | 0 | 0 | 1 | 1 |
| 4 Residual category | ||||
| 4.1 Advantages (ie, “How does a system/the society ‘benefit’ from variance/variation/diversity?”) | 0 | 0 | 1 | 1 |
| 4.2 Hypospadias | 0 | 0 | 1 | 1 |
| 4.3 Puberty | 0 | 0 | 1 | 1 |
| Total | 8 | 14 | 25 | 47 |
CAH = congenital adrenal hyperplasia; dsd = diverse sex development.
| Group of participants categories and subcategories . | Persons concerned . | Parents . | Experts in the field . | Total . |
|---|---|---|---|---|
| Question: Which issues regarding intersex/dsd do you consider to be associated with the most conflicts? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Ethics | ||||
| 1.1 State or other controls | 0 | 0 | 1 | 1 |
| 1.2 Decision-making for children | 1 | 2 | 7 | 10 |
| 1.3 Participation | 0 | 0 | 1 | 1 |
| 1.4 Trust (eg, “misinformation”) | 1 | 1 | 1 | 3 |
| 2 (Medical) treatment | ||||
| 2.1 CAH | 0 | 0 | 1 | 1 |
| 2.2 Surgical interventions | 1 | 4 | 9 | 14 |
| 2.3 Timing | 0 | 1 | 0 | 1 |
| 2.4 Treatment practices | 1 | 0 | 7 | 8 |
| 3 Psyche and social environment | ||||
| 3.1 Closest reference persons (eg, “overweighting the issue intersex in the everyday life of a family with an intersex child”) | 4 | 1 | 2 | 7 |
| 3.2 Gender identity/role | 0 | 0 | 4 | 4 |
| 3.3 Openness (eg, “taboo vs openness”) | 0 | 1 | 2 | 3 |
| 4 Society | ||||
| 4.1 General public (eg, “public perception”) | 1 | 1 | 1 | 3 |
| 4.2 Norms/law | 5 | 0 | 5 | 10 |
| 5 Residual category | ||||
| 5.1 Lack of knowledge | 1 | 0 | 0 | 1 |
| 5.2 Life-span perspective (eg, “development in puberty”) | 1 | 0 | 1 | 2 |
| 5.3 Political correctness | 0 | 0 | 1 | 1 |
| Total | 16 | 11 | 43 | 70 |
| Question: Which decisions regarding intersex/dsd do you consider to be most difficult? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Development | ||||
| 1.1 Attitude of the parents (eg, “aptitude to withstand the ‘atypical’”) | 1 | 1 | 3 | 5 |
| 1.2 Choice of partner | 0 | 0 | 1 | 1 |
| 1.3 Identity (eg, “gender of rearing”) | 3 | 2 | 12 | 17 |
| 1.4 Normality vs specificity (eg, “What are ‘normal’ difficulties and what is caused by the diagnosis?”) | 0 | 1 | 0 | 1 |
| 2 Medical treatment | ||||
| 2.1 Choice of physician | 0 | 1 | 0 | 1 |
| 2.2 Cost issues | 0 | 0 | 1 | 1 |
| 2.3 Decisions on treatment | 1 | 2 | 3 | 6 |
| 2.4 Hormone therapy | 1 | 1 | 0 | 2 |
| 2.5 Education of the patient | 0 | 1 | 0 | 1 |
| 2.6 Surgery | 1 | 3 | 9 | 13 |
| 3 Social environment | ||||
| 3.1 Education | 0 | 1 | 1 | 2 |
| 3.2 Openness | 0 | 1 | 1 | 2 |
| 3.3 Stigma (ie, “Processing that something is ‘wrong’ with the child—enduring, recognizing, observing, respecting, appreciating, accepting”) | 1 | 0 | 0 | 1 |
| 4 Residual category | ||||
| 4.1 Abortion | 0 | 1 | 0 | 1 |
| 4.2 Nondecision (ie, “Is the decision to not decide anything a good decision?”) | 0 | 1 | 0 | 1 |
| 4.3 Openness | 0 | 0 | 1 | 1 |
| Total | 8 | 16 | 32 | 56 |
| Question: In the case of which decisions concerning intersex/dsd is—against the background of your own personal experience—most help needed? | ||||
| n = 6 | n = 5 | n = 17 | ||
| 1 Dealing with intersex in everyday life | ||||
| 1.1 Acceptance | 2 | 0 | 1 | 3 |
| 1.2 Gender (eg, “in deciding which gender identity is livable”) | 0 | 0 | 7 | 7 |
| 1.3 Self-esteem (eg, “to withstand adjustment pressure”) | 1 | 0 | 1 | 2 |
| 1.4 Sexuality | 0 | 0 | 2 | 2 |
| 1.5 Talking about diverse sex development | 0 | 0 | 4 | 4 |
| 2 Life-span perspective | ||||
| 2.1 Birth | 0 | 0 | 1 | 1 |
| 2.2 Choice of partner | 0 | 0 | 1 | 1 |
| 2.3 Diagnosis | 0 | 1 | 1 | 2 |
| 2.4 Early childhood | 0 | 0 | 2 | 2 |
| 2.5 Puberty | 0 | 1 | 0 | 1 |
| 3 Medical and psychosocial issues | ||||
| 3.1 Interventions and treatment | 5 | 3 | 6 | 14 |
| 3.2 Medical care services (eg, “navigation through the health care system”) | 1 | 0 | 1 | 2 |
| 4 Residual category | ||||
| 4.1 Juridical issues | 1 | 0 | 0 | 1 |
| 4.2 Timing (ie, “when postponing decisions”) | 0 | 0 | 1 | 1 |
| Total | 10 | 5 | 28 | 43 |
| Question: Which issues regarding intersex/dsd do you consider to be associated with the most research and knowledge gaps? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Medical science | ||||
| 1.1 Cerebral gender differences | 0 | 0 | 1 | 1 |
| 1.2 Diagnostics | 1 | 1 | 0 | 2 |
| 1.3 Etiology | 2 | 0 | 0 | 2 |
| 1.4 Fertility | 0 | 1 | 0 | 1 |
| 1.5 Progress (ie, “How can we move forward in medicine?”) | 1 | 0 | 0 | 1 |
| 1.6 Risk of degeneration | 0 | 4 | 1 | 5 |
| 2 Quality of care | ||||
| 2.1 Effect of psychosocial support | 0 | 1 | 2 | 3 |
| 2.2 Influencing factors on outcome | 0 | 1 | 2 | 3 |
| 2.3 Long-term outcome | 1 | 5 | 4 | 10 |
| 2.4 Care of older patients | 0 | 0 | 1 | 1 |
| 3 Society and gender | ||||
| 3.1 Dealing with intersex/dsd | 2 | 0 | 4 | 6 |
| 3.2 Education | 1 | 0 | 2 | 3 |
| 3.3 Gender development (eg, “development and prognosis for the development of the psychological gender”) | 0 | 1 | 4 | 5 |
| 3.4 Historical appraisal (ie, “intersex in the Nazi period”) | 0 | 0 | 1 | 1 |
| 4 Residual category | ||||
| 4.1 Advantages (ie, “How does a system/the society ‘benefit’ from variance/variation/diversity?”) | 0 | 0 | 1 | 1 |
| 4.2 Hypospadias | 0 | 0 | 1 | 1 |
| 4.3 Puberty | 0 | 0 | 1 | 1 |
| Total | 8 | 14 | 25 | 47 |
| Group of participants categories and subcategories . | Persons concerned . | Parents . | Experts in the field . | Total . |
|---|---|---|---|---|
| Question: Which issues regarding intersex/dsd do you consider to be associated with the most conflicts? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Ethics | ||||
| 1.1 State or other controls | 0 | 0 | 1 | 1 |
| 1.2 Decision-making for children | 1 | 2 | 7 | 10 |
| 1.3 Participation | 0 | 0 | 1 | 1 |
| 1.4 Trust (eg, “misinformation”) | 1 | 1 | 1 | 3 |
| 2 (Medical) treatment | ||||
| 2.1 CAH | 0 | 0 | 1 | 1 |
| 2.2 Surgical interventions | 1 | 4 | 9 | 14 |
| 2.3 Timing | 0 | 1 | 0 | 1 |
| 2.4 Treatment practices | 1 | 0 | 7 | 8 |
| 3 Psyche and social environment | ||||
| 3.1 Closest reference persons (eg, “overweighting the issue intersex in the everyday life of a family with an intersex child”) | 4 | 1 | 2 | 7 |
| 3.2 Gender identity/role | 0 | 0 | 4 | 4 |
| 3.3 Openness (eg, “taboo vs openness”) | 0 | 1 | 2 | 3 |
| 4 Society | ||||
| 4.1 General public (eg, “public perception”) | 1 | 1 | 1 | 3 |
| 4.2 Norms/law | 5 | 0 | 5 | 10 |
| 5 Residual category | ||||
| 5.1 Lack of knowledge | 1 | 0 | 0 | 1 |
| 5.2 Life-span perspective (eg, “development in puberty”) | 1 | 0 | 1 | 2 |
| 5.3 Political correctness | 0 | 0 | 1 | 1 |
| Total | 16 | 11 | 43 | 70 |
| Question: Which decisions regarding intersex/dsd do you consider to be most difficult? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Development | ||||
| 1.1 Attitude of the parents (eg, “aptitude to withstand the ‘atypical’”) | 1 | 1 | 3 | 5 |
| 1.2 Choice of partner | 0 | 0 | 1 | 1 |
| 1.3 Identity (eg, “gender of rearing”) | 3 | 2 | 12 | 17 |
| 1.4 Normality vs specificity (eg, “What are ‘normal’ difficulties and what is caused by the diagnosis?”) | 0 | 1 | 0 | 1 |
| 2 Medical treatment | ||||
| 2.1 Choice of physician | 0 | 1 | 0 | 1 |
| 2.2 Cost issues | 0 | 0 | 1 | 1 |
| 2.3 Decisions on treatment | 1 | 2 | 3 | 6 |
| 2.4 Hormone therapy | 1 | 1 | 0 | 2 |
| 2.5 Education of the patient | 0 | 1 | 0 | 1 |
| 2.6 Surgery | 1 | 3 | 9 | 13 |
| 3 Social environment | ||||
| 3.1 Education | 0 | 1 | 1 | 2 |
| 3.2 Openness | 0 | 1 | 1 | 2 |
| 3.3 Stigma (ie, “Processing that something is ‘wrong’ with the child—enduring, recognizing, observing, respecting, appreciating, accepting”) | 1 | 0 | 0 | 1 |
| 4 Residual category | ||||
| 4.1 Abortion | 0 | 1 | 0 | 1 |
| 4.2 Nondecision (ie, “Is the decision to not decide anything a good decision?”) | 0 | 1 | 0 | 1 |
| 4.3 Openness | 0 | 0 | 1 | 1 |
| Total | 8 | 16 | 32 | 56 |
| Question: In the case of which decisions concerning intersex/dsd is—against the background of your own personal experience—most help needed? | ||||
| n = 6 | n = 5 | n = 17 | ||
| 1 Dealing with intersex in everyday life | ||||
| 1.1 Acceptance | 2 | 0 | 1 | 3 |
| 1.2 Gender (eg, “in deciding which gender identity is livable”) | 0 | 0 | 7 | 7 |
| 1.3 Self-esteem (eg, “to withstand adjustment pressure”) | 1 | 0 | 1 | 2 |
| 1.4 Sexuality | 0 | 0 | 2 | 2 |
| 1.5 Talking about diverse sex development | 0 | 0 | 4 | 4 |
| 2 Life-span perspective | ||||
| 2.1 Birth | 0 | 0 | 1 | 1 |
| 2.2 Choice of partner | 0 | 0 | 1 | 1 |
| 2.3 Diagnosis | 0 | 1 | 1 | 2 |
| 2.4 Early childhood | 0 | 0 | 2 | 2 |
| 2.5 Puberty | 0 | 1 | 0 | 1 |
| 3 Medical and psychosocial issues | ||||
| 3.1 Interventions and treatment | 5 | 3 | 6 | 14 |
| 3.2 Medical care services (eg, “navigation through the health care system”) | 1 | 0 | 1 | 2 |
| 4 Residual category | ||||
| 4.1 Juridical issues | 1 | 0 | 0 | 1 |
| 4.2 Timing (ie, “when postponing decisions”) | 0 | 0 | 1 | 1 |
| Total | 10 | 5 | 28 | 43 |
| Question: Which issues regarding intersex/dsd do you consider to be associated with the most research and knowledge gaps? | ||||
| n = 6 | n = 5 | n = 18 | ||
| 1 Medical science | ||||
| 1.1 Cerebral gender differences | 0 | 0 | 1 | 1 |
| 1.2 Diagnostics | 1 | 1 | 0 | 2 |
| 1.3 Etiology | 2 | 0 | 0 | 2 |
| 1.4 Fertility | 0 | 1 | 0 | 1 |
| 1.5 Progress (ie, “How can we move forward in medicine?”) | 1 | 0 | 0 | 1 |
| 1.6 Risk of degeneration | 0 | 4 | 1 | 5 |
| 2 Quality of care | ||||
| 2.1 Effect of psychosocial support | 0 | 1 | 2 | 3 |
| 2.2 Influencing factors on outcome | 0 | 1 | 2 | 3 |
| 2.3 Long-term outcome | 1 | 5 | 4 | 10 |
| 2.4 Care of older patients | 0 | 0 | 1 | 1 |
| 3 Society and gender | ||||
| 3.1 Dealing with intersex/dsd | 2 | 0 | 4 | 6 |
| 3.2 Education | 1 | 0 | 2 | 3 |
| 3.3 Gender development (eg, “development and prognosis for the development of the psychological gender”) | 0 | 1 | 4 | 5 |
| 3.4 Historical appraisal (ie, “intersex in the Nazi period”) | 0 | 0 | 1 | 1 |
| 4 Residual category | ||||
| 4.1 Advantages (ie, “How does a system/the society ‘benefit’ from variance/variation/diversity?”) | 0 | 0 | 1 | 1 |
| 4.2 Hypospadias | 0 | 0 | 1 | 1 |
| 4.3 Puberty | 0 | 0 | 1 | 1 |
| Total | 8 | 14 | 25 | 47 |
CAH = congenital adrenal hyperplasia; dsd = diverse sex development.
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