Raising awareness and addressing inequities for people with Down syndrome in South Africa

Abstract Globally, individuals with Down syndrome (DS) face profound inequities in social and health care access. These challenges are further compounded by racial disparities as well as a lack of awareness, research, and support, particularly in the Global South. This commentary discusses the multi...

Full description

Saved in:
Bibliographic Details
Main Authors: Eimear McGlinchey, Juan Fortea, Bulela Vava, Yvette Andrews, Kirti Ranchod, Atholl Kleinhans
Format: Article
Language:English
Published: BMC 2025-01-01
Series:International Journal for Equity in Health
Online Access:https://doi.org/10.1186/s12939-024-02349-3
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1841544913747968000
author Eimear McGlinchey
Juan Fortea
Bulela Vava
Yvette Andrews
Kirti Ranchod
Atholl Kleinhans
author_facet Eimear McGlinchey
Juan Fortea
Bulela Vava
Yvette Andrews
Kirti Ranchod
Atholl Kleinhans
author_sort Eimear McGlinchey
collection DOAJ
description Abstract Globally, individuals with Down syndrome (DS) face profound inequities in social and health care access. These challenges are further compounded by racial disparities as well as a lack of awareness, research, and support, particularly in the Global South. This commentary discusses the multifaceted challenges and disparities encountered by people with DS in South Africa, highlighting the need for targeted interventions. The paper will summarise the proceedings and outcomes of an imbizo—a strategic gathering of stakeholders in South Africa. This event brought together a diverse group from the DS community, including individuals with DS, their families, healthcare providers, non-profit organizations, and representatives from the Gauteng Department of Health. The discussions at the imbizo were organized into five key thematic areas: Advocacy and Awareness, Inclusion and Engagement, Education, Data and Research, and Networking and Collaboration. Additionally, the paper will underscore the critical need for the establishment of a dedicated DS research network in South Africa. Such a network is envisioned to foster collaboration, facilitate knowledge sharing, and ensure that research initiatives are closely aligned with the needs of the DS community. Overcoming these inequities requires a holistic approach that encompasses policy reforms and the crafting of inclusive services. In its concluding sections, the paper will explore future avenues for creating a sustainable framework aimed at addressing the multifaceted needs of the DS community in South Africa. This initiative represents an effort towards amplifying the well-being, rights, and inclusion of people with DS. Highlighting the necessity of a collaborative and multifaceted approach, this paper proposes a path towards a more inclusive society, advocating for the mitigation of challenges faced by this marginalized community.
format Article
id doaj-art-f186a96775324c2eb13749fb7a029ce3
institution Kabale University
issn 1475-9276
language English
publishDate 2025-01-01
publisher BMC
record_format Article
series International Journal for Equity in Health
spelling doaj-art-f186a96775324c2eb13749fb7a029ce32025-01-12T12:12:20ZengBMCInternational Journal for Equity in Health1475-92762025-01-012411710.1186/s12939-024-02349-3Raising awareness and addressing inequities for people with Down syndrome in South AfricaEimear McGlinchey0Juan Fortea1Bulela Vava2Yvette Andrews3Kirti Ranchod4Atholl Kleinhans5Global Brain Health Institute, Trinity College DublinGlobal Brain Health Institute, Trinity College DublinGauteng Department of HealthTekanoUniversity of WitwatersrandTekanoAbstract Globally, individuals with Down syndrome (DS) face profound inequities in social and health care access. These challenges are further compounded by racial disparities as well as a lack of awareness, research, and support, particularly in the Global South. This commentary discusses the multifaceted challenges and disparities encountered by people with DS in South Africa, highlighting the need for targeted interventions. The paper will summarise the proceedings and outcomes of an imbizo—a strategic gathering of stakeholders in South Africa. This event brought together a diverse group from the DS community, including individuals with DS, their families, healthcare providers, non-profit organizations, and representatives from the Gauteng Department of Health. The discussions at the imbizo were organized into five key thematic areas: Advocacy and Awareness, Inclusion and Engagement, Education, Data and Research, and Networking and Collaboration. Additionally, the paper will underscore the critical need for the establishment of a dedicated DS research network in South Africa. Such a network is envisioned to foster collaboration, facilitate knowledge sharing, and ensure that research initiatives are closely aligned with the needs of the DS community. Overcoming these inequities requires a holistic approach that encompasses policy reforms and the crafting of inclusive services. In its concluding sections, the paper will explore future avenues for creating a sustainable framework aimed at addressing the multifaceted needs of the DS community in South Africa. This initiative represents an effort towards amplifying the well-being, rights, and inclusion of people with DS. Highlighting the necessity of a collaborative and multifaceted approach, this paper proposes a path towards a more inclusive society, advocating for the mitigation of challenges faced by this marginalized community.https://doi.org/10.1186/s12939-024-02349-3
spellingShingle Eimear McGlinchey
Juan Fortea
Bulela Vava
Yvette Andrews
Kirti Ranchod
Atholl Kleinhans
Raising awareness and addressing inequities for people with Down syndrome in South Africa
International Journal for Equity in Health
title Raising awareness and addressing inequities for people with Down syndrome in South Africa
title_full Raising awareness and addressing inequities for people with Down syndrome in South Africa
title_fullStr Raising awareness and addressing inequities for people with Down syndrome in South Africa
title_full_unstemmed Raising awareness and addressing inequities for people with Down syndrome in South Africa
title_short Raising awareness and addressing inequities for people with Down syndrome in South Africa
title_sort raising awareness and addressing inequities for people with down syndrome in south africa
url https://doi.org/10.1186/s12939-024-02349-3
work_keys_str_mv AT eimearmcglinchey raisingawarenessandaddressinginequitiesforpeoplewithdownsyndromeinsouthafrica
AT juanfortea raisingawarenessandaddressinginequitiesforpeoplewithdownsyndromeinsouthafrica
AT bulelavava raisingawarenessandaddressinginequitiesforpeoplewithdownsyndromeinsouthafrica
AT yvetteandrews raisingawarenessandaddressinginequitiesforpeoplewithdownsyndromeinsouthafrica
AT kirtiranchod raisingawarenessandaddressinginequitiesforpeoplewithdownsyndromeinsouthafrica
AT athollkleinhans raisingawarenessandaddressinginequitiesforpeoplewithdownsyndromeinsouthafrica