Analisis Fenomenologis terhadap Peran Pengasuh Dalam Mendidik, Merawat dan Membentuk Karakter Anak dengan Kelainan Genetik Albinisme di Panti Asuhan St. Lucy Pilipini

Abstract

This study aims to deeply understand the experiences and meanings experienced by caregivers caring for children with albinism at St. Lucy Orphanage in the Philippines. The research method used was descriptive qualitative with a phenomenological approach, focusing on the interpretation of the caregivers' lived experiences. Data were collected through in-depth interviews, participant observation, and documentation. Data were then analyzed using the stages of data reduction, data presentation, and phenomenological interpretation. The results indicate that caregivers play a dual role: as educators, protectors, and emotional supporters for children with albinism. They face challenges such as limited medical knowledge, social stigma, and the child's special needs related to skin and vision care. However, through empathy, patience, and institutional support, caregivers are able to create an inclusive and compassionate environment. This study emphasizes the importance of specialized training and mentoring for caregivers in understanding the medical and psychosocial aspects of children with albinism to ensure optimal and sustainable care.