Resources search

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
2020

Expand view

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.

Pats Journal

LARUBI, Pat Robert
2020

Expand view

Pats Journal – Albinism News Network (ANN) is an online story telling platform where people come to discover, relate and share positive and inspiring stories of persons with albinism and those around us helping make a difference in the world. The platform features in-depth news analysis, information, interviews, opinion and coverage of events promoting public awareness and social inclusion of persons with albinism

 

Overall, the portal was aimed at creating public awareness across the East African Region and the world at large about challenges face by PWA in Africa in a bid to reduce stigma, social oppression, break myth and showcase the potential of PWA through a well structure and unlimited media space.

COVID 19 disability inclusion emergency response: by the albino foundation, disability inclusion Nigeria

March 2020

Expand view

In order to reduce the spread and impact of COVID 19 on persons with disabilities globally, The Albino Foundation-DISABILITY INCLUSION NIGERIA PROJECT in alignment with the recommendations of International Disability Alliance (IDA) has come up with simple steps to mitigating the virus within this vulnerable population. The basic measures includes:

1.0 Persons with disabilities

2.0 Government

3.0 Members of the public

Measuring Stigma related to People with Albinism in Tanzania: A Cultural Validation Study of the EMIC-CSS and SDS among Adults

DE GROOT, Tjitske
JACQUET, Wolfgang
MEURS, Pieter
PETERS, Ruth
2020

Expand view

Purpose: People with albinism in Tanzania are severely stigmatised. A measurement tool to assess this stigmatisation among adults is lacking. This research aimed at the cultural validation of two Scales to measure stigma related to albinism: The Albinism Social Distance Scale (A-SDS) and the Albinism Explanatory Model Interview Catalogue Community Stigma Scale (A-EMIC-CSS).

 

Method: Conceptual, item, semantic and operational equivalences were evaluated through focus groups and interviews. A pilot study among adults attending religious institutes, as a representation of Tanzanian society, was conducted to assess the measurement equivalence. There were 101 respondents for the test and 79 respondents for the re-test.

 

Results: Conceptual, item, semantic and operational equivalences of the Scales are sufficient. In terms of measurement equivalence, the internal consistency of the A-SDS and A-EMIC-CSS are adequate. However, social desirability should be taken into account when interpreting the findings.

 

Conclusion and Implications: The insights provided by this article can aid in the development of tools to measure stigma cross-culturally and across stigmatising conditions. The combination of the two Scales for short and long-term effect measurement is recommended.

E-bulletin