Suboptimal initial provision of information at birth

95

Relying on the clinical staff

63

Emotional vulnerability of the mother

68

Treatability of condition

58

Relief on talking to a consultant surgeon

16

‘Moving the concern to the back of the mind’

53

Comparison of child with another who is ‘worse’

37

Handling the subject of genital anomalies

Lack of pain

32

Ridicule and stigma

68

Comparison of child with another in similar situation

32

Difficult subject to discuss with parents/relatives

63

‘Getting on with it’

11

Difficult subject to discuss with friends

63

‘Focusing on the positive’

11

Appropriate level of sensitivity as inpatients

26

Less of a concern if more serious anomalies present

11

Support for parents to discuss condition with child

21

Professional need for sensitivity when teaching

16

Impact of condition on child and family

Nonspecific concerns about anaesthetic and surgery

84

Concomitant stressors

Sexual function and fertility

84

Complications associated with delivery and prematurity

32

Unclear about postoperative appearance of genitalia

58

Problems with cognitive or social development

11

Special care after surgery

47

Other offspring with medical conditions

11

Need for more than one operation

37

Recent bereavements

11

Risk of recurrence

26

Marital disharmony

11

Pain following surgery

22

Delay in surgery and likelihood of ridicule in school

11

Sources of support

Relatives—helpful

74

Suggestions on improving service

Consultant surgeons

74

Local network of affected families

42

Other health care staff

42

Information on cleaning genitalia

42

Relatives—not helpful

26

Information on postoperative care of urinary catheter

26

Parents of other affected children

16

Gradual and steady provision of information

32

Health visitors

16

Images of average outcomes

32

General practitioners

16

Recommended websites

32

Link person for family support at presentation

21

Pain control following surgery

11