PROJECT LISTEN: FOUNDATIONS AND PRELIMINARY DEVELOPMENT OF A PEER EMPOWERMENT PROGRAM FOR CAREGIVERS OF CHILDREN WITH VARIATIONS OF SEX CHARACTERISTICS
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Graduate group
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Variations of Sex Characteristics (VSC)
Differences of Sex Development (DSD)
Peer Support
Intervention Development
Intervention Mapping
Empowerment
Liberation Health Social Work
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Abstract
Poor societal understanding of human sex development contributes to social isolation and stigma experienced by the 1.7% of people born with innate variations of sex characteristics (VSC), referred to by some as intersex traits. Caregivers of children with VSC have inadequate access to accurate information and evidence-based social support, resulting in disempowerment which negatively impacts children’s quality of life. Methods: Semi-structured interviews with 11 caregivers and 11 adults with VSC analyzed phenomenologically generated formative research. A working group of six VSC community leaders co-designed a preliminary psychosocial support intervention blueprint for caregivers of children with VSC, inspired by the six steps of Intervention Mapping (IM). Results: Intergenerational and peer support and wisdom from experienced VSC community members can de-stigmatize the process of learning of a child’s variation by increasing families’ confidence in their content knowledge and skills, improving their communication with providers, and emphasizing the importance of a child’s right to self-determination and authenticity, while deepening relationships and experiencing unforeseen personal growth and joy. Conclusions: Findings contribute to emerging literature regarding experiences and constructive programming for the psychosocial support needs of caregivers of children with VSC. Community-based peer support for VSC may improve children’s lives by fostering social connections and increasing knowledge and advocacy skills of their caregivers to safeguard their human rights and prioritize their authenticity.