Nepal Sickle Cell Disease Project

Dang District, Nepal

Dang District, Nepal

2018/2019 Team Leaders: Keegan Marchand & Iulia Dascalu
Location: Dang District, Nepal
Date & Duration of Project: 4-5 weeks in May 2020
Number of Positions: 4-8
Project Website: www.ubcsicklecell.wordpress.com

The Nepal Sickle Cell Project is a global health initiative with a focus on public health, advocacy, and health education in rural communities in Nepal.

The project was born in the summer of 2015, when a group of 12 UBC medical students traveled to the western province of Dang in rural Nepal. Partnering with the non-profit organizations Creating Possibilities (CP) Nepal and Her International, the team connected with local Nepali health professionals and developed a project to screen for Sickle-Cell Disease (SCD) within the indigenous Tharu population of that region, who experience higher rates of SCD than the general Nepali population. SCD is an inherited hemoglobinopathy that is characterized by crescent or ‘sickle’-shaped red blood cells that can block small blood vessels and impair blood flow, which results in multi-organ damage, severe pain crises, increased risk of infection, and even death if not managed appropriately.

In the first year of the project, data collected (and later published) by the initial UBC team through a mass-screening program estimated the prevalence of the sickle cell trait to be 9.3% among the Tharu population in Dang. Since then, the Nepal Sickle Cell project has aimed to improve outcomes for individuals with SCD through four major components: the development of educational resources to raise awareness of SCD within the Tharu community and promote earlier screening and diagnosis, fundraising to support continued screening efforts, research, and advocacy to increase government support for individuals with SCD.

Each year, fundraising efforts by the UBC teams have supported the continuation of mass SCD screening at community health posts in Dang. The money raised for the project contributes towards the purchase of screening equipment and supplies for local health posts, training and support for lab technicians and health workers, and the individual costs of screening and transportation (to and from health centres) for members of the local community.

In recent years, the primary focus of the project has been to increase awareness and understanding of SCD among the Tharu community through the development and delivery of educational materials. Despite the fact that some government support is available for individuals officially diagnosed with SCD in Nepal, a multitude of barriers prevents many individuals from accessing treatment, or from even being diagnosed to begin with. One of the most significant of these barriers to care is the level of health literacy among the local population, particularly around Sickle Cell Disease.

The UBC Sickle Cell Project has attempted to address gaps in SCD literacy through the development of culturally sensitive educational modules about Sickle Cell Disease. These modules explain the cause, symptoms, and inheritance pattern of SCD at a level appropriate for the local population and encourage all individuals to get screened, outlining the entire process of screening, diagnosis, and access to treatment. Since the creation of these modules by the 2017 team, subsequent teams have continued to revise/develop educational materials and visit local schools and community mothers’ groups to deliver them with the help of local CP Nepal workers. Furthermore, UBC teams have trained local female community health workers to deliver these modules to their own community members, in order to allow educational efforts to continue in sustainably over the long-term.

Additionally, UBC students and CP Nepal staff have collaborated annually to hold “forum theatres”–educational plays in public community spaces­–where up to 200 locals gather to watch the story of a family who goes through the process of screening, diagnosis and treatment for SCD.

Nepal is a low-income country with many social and economic challenges such as political instability, poverty, corruption, low literacy rates, and gender inequality. As such, access to health services is poor, especially in rural areas where people must travel long distances to receive medical attention. Multiple UBC teams have conducted needs assessments and qualitative interviews to better characterize the health and socioeconomic barriers faced by the community and, in particular, the challenges that individuals with SCD face while accessing care.

Furthermore, research has gone hand in hand with the educational arm of the project as recent teams (2018 and 2019) have gathered quantitative data on individuals’ understanding of SCD before and after attending educational modules in order to assess their knowledge retention and, consequently, the effectiveness of the modules. This data will be used to inform further revision of our educational materials in order to improve their ability to facilitate effective and culturally appropriate knowledge translation.

Through meetings with local doctors and government officials, UBC students have lobbied for increased attention and resources to be directed towards individuals with SCD. The ultimate goal of this advocacy component is to pressure the government to make SCD screening part of the routine infant screening for at-risk subpopulations in Nepal.

nepal album

 

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