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1.
Pediatrics ; 154(1)2024 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-38845556

RESUMEN

A 15-year-old patient with metastatic synovial sarcoma conveyed to his palliative care physician that his dying wish was to start gender-affirming hormone therapy. His medical team was able to identify resources to support both him and his family as they navigated the immense difficulty of a cancer diagnosis and began to understand their child's gender identity. Literature on the care of gender diverse pediatric patients with terminal illness is minimal, but applications from adult literature, and research on supporting gender diverse adolescents more broadly, provided guidance for palliative care, oncology, and gender-affirming care teams. We believe that honoring and supporting the gender identity of adolescents with terminal illness is an essential aspect of end-of-life care. This case report outlines challenges faced by multidisciplinary pediatric team members who provided gender-affirming care for a minor under hospice care and amplifies the need for future research and guidelines pertinent to this patient population.


Asunto(s)
Cuidados Paliativos , Personas Transgénero , Humanos , Adolescente , Cuidados Paliativos/ética , Personas Transgénero/psicología , Masculino , Femenino , Cuidados Paliativos al Final de la Vida
2.
J Adolesc Health ; 2023 Sep 16.
Artículo en Inglés | MEDLINE | ID: mdl-37715763

RESUMEN

PURPOSE: Gender diverse youth (GDY) have improved mental health when affirmed by parents, but little is known about the support parents of GDY seek, receive, and still need. This qualitative study explored experiences of parents of GDY to better understand their support needs. METHODS: Parents of GDY submitted videos and were interviewed about their journey supporting their GDY. Data collection continued until thematic saturation was reached. Audio recordings from videos and interviews were transcribed and analyzed via an inductive thematic analysis using the rigorous and accelerated data reduction technique. RESULTS: In total, 25 parents of GDY (mean age 15 years, range 6-21 years) from 12 states provided video recordings and interviews; 36% were People of Color and 28% were fathers. We identified four themes and 12 subthemes. Theme 1: support through education included acknowledging ignorance about gender diversity and remedying ignorance. Theme 2: engaging community noted that support was multilayered and based around the family unit and pre-existing community. Theme 3: expanding community included acknowledgement that seeking new community was important for many to reduce feelings of isolation. It also highlighted that "safe spaces" for parents of GDY were not always safe for those of other marginalized groups, particularly People of Color. Theme 4: support in healthcare spaces centered experiences navigating medical and mental healthcare for GDY and feeling supported and unsupported in those spaces. DISCUSSION: Parents identified numerous ways they sought, received, and needed support to understand and affirm their GDY. These findings will aid development of targeted support interventions for parents of GDY. Further research is needed to evaluate the impact of these interventions on GDY health.

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