Background: There is limited reporting of the impact of genital difference on early childhood experience, although the young person’s viewpoint should be at the core of patient centred clinical decision making. The experience of girls living with Congenital Adrenal Hyperplasia (CAH) may differ according to context, being influenced by interactions within the family, with specialist teams as well as prevailing social values. Clearly there is a need to investigate this topic sensitively. Our aim was to facilitate exploration of childhood experiences related to genital difference in CAH.
Methods: This was a qualitative study involving a series of four semi-structured interviews, representing various clitoromegaly treatment and management pathways (including feminising genitoplasty, concealment techniques, and non-intervention), as part of a wider two-centre study of 25 families of children diagnosed with CAH. Ethical approval was gained only for an indirect enquiry around experience of typical recreational activities: swimming, playground games and sleepovers, to avoid eliciting distress. Interviews were recorded and transcribed, with thematic analysis performed independently by two clinicians with different backgrounds (clinical psychologist and paediatrician). Descriptive themes were analysed through the lens of developmental theory.
Results: Four themes were identified including (1) Adolescent Awareness: participants demonstrated an emerging recognition of genital differences only as they reached puberty; (2) Differently Normal: participants accepted emerging awareness of difference as part of a normal anatomical spectrum; (3) Concealing Difference: where participants reflected on their own behaviours (and those of parents) that may conceal genital differences to others around them; (4) “I'm not all about CAH”, denoting a sense of self only partially related to CAH.
Conclusion: From this process we reflected upon interpretive approaches of different professionals towards how genital difference is framed, and how girls can best be supported by the multidisciplinary team. We note how some participants might struggle to understand the purpose behind our indirect enquiry, arguably leading to tangential discussions unrelated to genital difference. We concluded that an indirect approach is based on unwarranted fears around acceptability and fear of triggering distress to participants, which may inhibit meaningful discussion. Two of the participants demonstrated eagerness to discuss issues frankly, which was not considered ethically permissible for this study. Future studies of this kind would benefit from a more open approach that includes direct enquiry, provided it is done with sensitivity by a skilled and informed researcher.
15 Sep 2022 - 17 Sep 2022