Con E de enfermera... Unidad pediátrica de albinismo / With E for nurse... Pediatric albinism unit

El 13 de junio es el Día Internacional de Sensibilización sobre el Albinismo, ese mismo día de 2022 coincidió con el anuncio de la inclusión de Genética, Neurofisiología, Dermatología y Pediatría en el Unidad de Albinismo en el Hospital La Fe de Valencia, la primera Unidad de Referencia Oftalmológica sobre Albinismo en España. Es una condición genética bastante desconocida que afecta a casi 3.000 personas en España y que se caracteriza por alteraciones en la visión, pero que presenta manifestaciones clínicas muy dispares asociadas a la ausencia o disminución de melanina en la piel, ojos o pelo. Hablamos con María Andreu, enfermera en el Servicio de Oftalmología y en la Unidad Pediátrica Oftalmológica de Albinismo del Hospital Universitari i Politècnic La Fe, que nos explica en qué consiste el servicio.(AU)

Experiences of a feasibility study of children with albinism in Zimbabwe: a discussion paper.

BACKGROUND: Feasibility studies are often a helpful prelude to constructing fundable research proposals. Where the intended research is in a foreign country, focuses on a vulnerable population, and is aggravated by political and pragmatic challenges, feasibility studies become essential. Albinism, a genetic condition of reduced melanin synthesis, is a major public health issue in southern Africa. Whilst much is known about the health needs of children with albinism, little is understood about how to address these effectively in low income countries. Further, the child care and protection needs of children with albinism are largely unexplored. Zimbabwe's current political and economic climate presents additional challenges to research on the topic. METHOD: The technical, economic, legal, collaborative, operational, schedule and political feasibilities (acronym TELCOSP) to undertaking a study on children with albinism in Zimbabwe were explored over a six week period of fieldwork in the country. RESULTS: Using the TELSCOSP framework allowed a deconstruction of each challenge to provide innovative solutions. The economic and legal feasibility aspects presented some difficulties that will require flexibility and perseverance to overcome. CONCLUSION: With the assistance of the local communities and people with albinism in Zimbabwe, the obstacles appear surmountable. The feasibility study provided a productive framework for addressing potential challenges in studying the needs of Zimbabwe's children living with albinism.