Project LISTEN: Foundations and Development of a Peer Empowerment Program for Caregivers of Children with Variations of Sex Characteristics

Author:

Scranton BonnieORCID,Doherty Meredith

Abstract

AbstractNearly 2% of the population is born with intersex traits or variations of sex characteristics (VSC). Marginalization of people with VSC whose experience of social isolation and stigma can lead to mental health challenges and low degrees of medical and self-empowerment. Infants and children with VSC rely on caregivers to make decisions which impact their medical and social-emotional wellbeing. Interview recordings were analyzed using Interpretive Phenomenological Analysis (IPA) and generated four preliminary themes that will be used to develop a logic model to inform the development of a novel peer-empowerment intervention: (1) the isolating and overwhelming experience of learning about child’s VSC; (2) caregivers desire early access to education and information; (3) connecting with peer support provides reassurance and lessens stigma; (4) developing skills of communication and advocacy help empower parents. Features of post-traumatic growth were endorsed by caregivers. In partnership with an advisory group of stakeholders, findings from this study will be used to develop a logic model of the psychological, social, and environmental determinants that our intervention will target to improve health and quality of life outcomes for new parents of children with VSC. Project LISTEN (Let Intersex Stories Teach, Enlighten, and Nurture) applies the concepts of epistemic justice and health liberation to support, educate, and empower caregivers of children with VSC. Clinical social workers are ideal champions for peer empowerment programs that work to develop critical consciousness in those who have been socially marginalized.

Publisher

Springer Science and Business Media LLC

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