Science and Social Work in Action: Developing a Peer-Empowerment Intervention for Caregivers of Intersex Children through Community-Engaged Research

Background and Purpose:
Approximately 1.7% of the population is born intersex, or with variations of sex characteristics (I/VSC), innate physical traits that do not fit typical definitions of “female” or “male.” Caregivers of children with I/VSC lack access to accurate information and evidence-based support, leading to disempowerment. Studies show elevated levels of parenting stress, stigma, depression, and anxiety among these caregivers which negatively impact children's well-being. While professionals recognize that psychosocial support enhances family acceptance and self-esteem in intersex children, no evidence-based interventions have previously existed in the United States. Project LISTEN is the first known intervention of its kind: an online peer support program, developed with stakeholders and focused on caregiver empowerment through education, connection, and skill-building to reduce health disparities among children with I/VSC.

Methods:
Semi-structured interviews were conducted with 11 caregivers of intersex children and 11 adults with I/VSC active in community empowerment activities. Interpretive Phenomenological Analysis (IPA) analyzed individuals’ understanding of their experiences, providing the formative research for Step 1 of the Intervention Mapping (IM) process. IM is a community-engaged, theory-driven framework for creating targeted health interventions that centers the expertise of those with lived experience. A community advisory board of six I/VSC leaders participated in four sessions, following IM’s six-step iterative and systematic approach to co-develop logic models of the problem, logic models of change, evaluation plans, and the program prototype itself.

Results:
Themes revealed that caregivers’ initial social isolation, alienation, and overwhelm abated through access to peers and shared knowledge. Participants described a lack of access to words or familiar concepts to describe their experiences or to conceptualize a future with their intersex child and often deferred to doctors’ opinions regarding non-medically necessary surgeries in attempts to “normalize” the child’s body. This resonates with Miranda Fricker’s notions of epistemic and hermeneutical injustice, in which marginalized people lack access to meaning making regarding their own lived experience. Within supportive intergenerational community spaces, parents rebuilt confidence in their identities and parenting abilities by acquiring content knowledge and advocacy skills.

A 6-week online program was developed, using a cohort model focused on empowerment through social connection, education about the science/medicine of VSC, developmentally appropriate diagnosis disclosure, navigation of medical appointments and community spaces/places of worship, VSC social movements and history, and media and awareness-raising campaigns. Its first year of implementation will be led by the researcher, a trained social worker and parent of a child with VSC; those completing the program will be eligible to train as future program facilitators, thus creating a sustainable community-led model.

Conclusions and Implications:
Project LISTEN is the first known US based I/VSC support intervention for caregivers that is rooted in both scientific method and community input. It embodies core social work values including social justice and self-determination by prioritizing stakeholder experiences. Utilizing social work science to develop responsive interventions, it addresses issues of social power, challenges dominant sex/gender norms, and seeks to restore parents’ access to the education, peer support and skill-building needed to support their intersex children and themselves.