Psychosocial research
One of the challenges of taking a psychosocial approach within biomedicine relates to the way that psychological phenomena are conceptualised and measured. Psychologists are often called on to measure aspects of psychosocial well-being, and hundreds of scales exist, such as those focusing on ‘coping’, ‘depression’, ‘body image’, ‘quality of life’, and so on. EuroPSI recognises that in some health service contexts, the naming of problems (e.g. ‘depression’) and their quantification are prerequisites for service development and provision. But these tools often fail to recognize highly specific experiences of people with intersex/dsd and their families.
If, for instance, shame is of concern, what value would such a measurement have for the people who are affected? Does a score on a scale say anything about a human being’s thoughts and feelings and how these influence the choices that they make? Is it more useful to work with shame in other ways? These doubts are consistent with the more general criticism of the indiscriminate use of psychometrics on minority groups including sexual minorities. Debates on the appropriate deployment of psychometrics can be expected to be on-going.
Many psychologists turn to qualitative approaches to make sense of people’s experiences and emotions to inform clinical practice. There is a growing body of qualitative research in this field, giving some clear indications of what it is like to experience atypical sex development and to receive medical treatment, and what can exacerbate emotional distress.
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EuroPSI advocates that all psychosocial research, whether quantitative or qualitative, be subjected to the same degree of scrutiny for quality, transparency and usefulness. We encourage rigorous ethical debates on psychosocial research and its impact on the wellbeing of participants. We are also keen for researchers to translate their findings and influence practice in positive ways, and to make sure that important insights gained, especially from rigorous qualitative research, are not lost in translation.
“The knowledge of genes, hormones and embryonic development is of significant importance but often does not answer many of the questions with respect to clinical and psychological management. These two aspects are interconnected to such extent that every decision taken by a medical professional will always exert its influence on psychological wellbeing.”
Stenvert Drop
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