Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

Abstract

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.

Points of interest

• Very little is known about the lived experiences of women with Albinism and their deliberations whilst making reproductive decisions.

• The research found that a key element of the overall experience is the sense of discrimination that the women had to face due to their physical appearance and visual impairment.

• Most women actively attempted to fight off notions of abnormality and to keep their identity close to what they perceived as normal.

• The women with and without children viewed pregnancy decisions as making difficult choices. Having a child who would not inherit Albinism was a key influence in pregnancy decisions.

• They strongly desired to protect the children from the difficult experiences that they have had.

• The research recommended that global and national policy makers and practitioners should introduce explicit measures to challenge the myths, stereotypes and prejudices associated with the condition including specific interventions towards supporting women in pregnancy decision making.

Keywords:

• Albinism
• experiences
• reproduction
• women
• motherhood

Acknowledgements

We express our sincere gratitude to Tainan Visual Impaired Massage Therapists Union for supporting this study. We thank all of the participants for providing their time and energy to this project without which this study would not have been possible.

Disclosure statement

No potential conflict of interest was reported by the authors.

Funding

This research study received no specific funding. Salaries of the team members were provided by the employing institutions.

Data availability statement

The interview transcripts are confidential and therefore not publicly available.