The VOICES Project: The creation of a self-advocacy measure for youth with Variations in Sex Traits/Intersex and related conditions

The presentation will present information about the development of a self-advocacy youth measure, based on a funded NIH grant (R21 MD015860-01—”Measuring Medical Care Experiences and Traumatic Stress in Differences of Sex Development”).

Youth with variations/differences of sex traits often experience stressful medical care experiences linked to mental health risks, including traumatic stress, anxiety, depression, and suicidality, although little is known about how diverse medical care experiences differentially impact mental health and well-being. A significant barrier to

understanding youth medical care experiences, needs, preferences, and impacts is the lack of a validated patient-centered, self-report instrument specific to the diverse DSD youth population to assess these issues. The proposed research employs a community based participatory approach to develop and evaluate initial psychometric properties of an instrument assessing medical care experiences, unmet care needs and preferences, and impacts on mental health, including traumatic stress, in youth with these characteristics. In addition, we will be incorporating perspectives regarding gender related experience and needs as well as terminology preferences into the development of the instrument. We deliberately employ a broad recruitment strategy, integrating the diversity of experience represented by the many communities whose voices we mean to represent.

Amy Tishelman, Ph.D.I is a clinical psychologist on the faculty at Boston College in the Department of Psychology and Neuroscience, with expertise in research, teaching and clinical work with youth and young adults with DSD. She is the former Director of Clinical Research in the Behavioral Health, Endocrinology and Urology (BE-U) Program and Gender Multispecialty Service (GeMS) at Boston Children’s Hospital (BCH), as well as a former Senior Attending Psychologist in both programs. The BE-U program provides multidisciplinary clinical services to youth and young adults with DSD and related diagnoses, while the GeMS program serves transgender and gender diverse children, adolescents and young adults. Dr. Tishelman is the international lead in developing standards of care for prepubescent gender diverse children for WPATH and co-chairs an American Psychological Association Task Force on DSD.