Needs Assessment: Improving the Long-Term Support of Children and Families With Variations of Sex Characteristics (VSC) by Participatory Research

Context

Variations of sex characteristics (VSC) comprise a group of congenital variants, which can lead to obvious genital ambiguity or differences in development of internal sex organs. Apart from biological considerations, affected families face various social and psychological challenges (e.g. gender of rearing, reproduction, discrimination).

In the past, medical decisions were largely made by medical personnel caring for these families. More recently, holistic approaches and shared decision making have gained increasing importance. Multidisciplinary teams (medical professionals, psychologists, social workers and ethicists) discuss each individual case in the best interest of the child and make joint decisions with involvement of the parents.

About the project

We have recognized the need for peer support, meaning other affected individuals and families acting as a crucial supportive element and enabling families to deal with these challenging situations.

The aim of this project is a transdisciplinary exchange between affected individuals, families, members of peer support groups and medical professionals in focus groups, questionnaires, and participant observations. Our goal is to improve our understanding regarding needs for peer support and to enhancing networking among affected individuals whilst guaranteeing the quality and neutrality of information.

To our knowledge, this is the first Citizen Science project in the field of VSC in Switzerland. In this very controversially discussed field it is essential to improve the dialogue between peers and medical professionals with the ultimate goal of improving support and quality of life in affected individuals.