Birth stories of South African mothers of children with albinism: A critical human rights analysis
Rattachement africain : ca, Afrique du Sud. Niveau de preuve : code pays fourni par la source.
Le résumé fourni par la source
The genetic condition of oculocutaneous albinism is disproportionately present in Africa. Little research has addressed the experiences of mothers impacted by albinism, even though they are more likely to be impacted by human rights violations. A qualitative study was designed to examine the resilience of mothers affected by albinism in South Africa. Virtual and in-person fieldwork was conducted with the facilitation of community-based researchers and local cultural liaisons. Findings Giving birth to of a child with albinism in South Africa, as in many parts of sub-Saharan Africa, was a life-defining moment for mothers and their families, setting them on a trajectory of health-related stigma, gender inequalities, reduced access to social determinants of health, and other human rights violations. Mothers engaged in sense-making processes shaped by the responses of birth attendants and families, and that reflected social discourses. Their resilience was impacted by access to health teaching, genetic counselling, and health and social services, which were often incomplete or absent all together. Civil society organizations, peer groups, and faith communities were vital in filling these gaps. The experience giving birth to a child with albinism was both the same and different compared to mothers forty years earlier. What varied was the digital availability of health information; progressive health and social policies and resourcing; and human rights instruments. These transformations point to best practices to support mothers’ resilience.
Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.
Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- Birth stories of South African mothers of children with albinism: A critical human rights analysis
- Date Crossref
- 01/01/2024
- Éditeur
- Elsevier BV
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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Western University pays non établi dans la noticeUniversité ou école supérieure
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Trinity Western University pays non établi dans la noticeUniversité ou école supérieure
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University of the Witwatersrand University of the Witwatersrand, Afrique du Sud (code pays fourni par la source)Université ou école supérieure
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University of Pretoria University of Pretoria, Afrique du Sud (code pays fourni par la source)Université ou école supérieure
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University of Witwatersrand University of Witwatersrand, Afrique du Sud (pays nommé en fin d’affiliation)Université ou école supérieure
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Africa Albinism Network pays non établi dans la noticeInstitution
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Albinism Society of South Africa Afrique du Sud (pays nommé en fin d’affiliation)Institution
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Albinism Advocacy for Access South Africa Afrique du Sud (pays nommé en fin d’affiliation)Institution
Western University, Trinity Western University et University of the Witwatersrand (University of the Witwatersrand, Afrique du Sud), avec 5 autres affiliations. Pays d’affiliation : Afrique du Sud.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.