Combating Stigma Against People Living with Lymphatic Filariasis in Ghana
Lymphatic Filariasis (LF) is a neglected and stigmatized mosquito-borne illness that damages the lymphatic system leading to disfiguring swelling of the limbs, breasts and genitals. Widespread in 72 countries affecting some 120 million worldwide, LF is one of the world’s leading causes of permanent and long-term disability. People living with LF typically experience a triple burden: (1) the direct impact of the disease, (2) social stigma (such as shame, harassment, exclusion) and isolation, and (3) mental health impacts resulting from both the disease and consequent stigma. Current literature is treatment-focused and largely neglects the cultural and social context of the illness, with limited attention paid to stigma and few stigma-oriented interventions. Drawing together an interdisciplinary team of researchers from Canada and Ghana, our project addresses five aims focused on health, wellbeing, social inclusion and cultural understandings of LF with a geographic focus on areas of Ghana particularly hard hit by the disease. We aim to: (1) understand community perceptions, interpretations and cultural perspectives of LF, (2) determine the causes underpinning social stigmatization of people with LF, (3) develop an intervention to assist in alleviating stigma and isolation related to LF, (4) implement and assess the intervention (5) design a framework for the development of culturally appropriate and effective interventions that can be applied in other African countries where LF is endemic. We aim to improve the health and wellbeing of people living with LF through: (1) an increased understanding of the underlying causes of stigma and isolation, (2) the development, implementation and evaluation of a culturally sensitive intervention to prevent and alleviate these experiences and (3) the creation of a framework to help adapt this intervention to other contexts.
Project Team:
Co-PIs: Kristi Heather Kenyon, University of Winnipeg, Alexander Kwarteng, Kwame Nkrumah University of Science and Technology
Co-Applicants: Mary Asirifi, Veronica Fynn-Bruey, Regiane Garcia, Colleen McMillan, collaborator: Jonathan Roberts).
This research is funded by a Canadian Institutes of Health Research (CIHR) Project Grant.
Update: This project has been delayed by the Covid-19 pandemic and a consequent suspension of in person research. Data collection is complete and translation and analysis is currently underway.
Working Paper
Alexander Kwarteng, Kristi Heather Kenyon, Regiane Garcia, Priscilla Kini, Samuel Opoku Asiedu, and Samuel Ahuno “Knowledge and Perceptions of Lymphatic Filariasis Patients in Selected Communities in Western Ghana.” (from a related earlier project)