• Women's experiences of living with albinism in Taiwan and perspectives on reproductive decision making: a qualitative study

      Huang, Mei-Zen; Chen, Li-Li; Hung, Shu-Ling; Puthussery, Shuby; National Tainan Junior College of Nursing; National Taipei University of Nursing and Health Sciences; University of Bedfordshire (Routledge, 2020-12-21)
      People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.