An epidemiology study of fetal alcohol syndrome (FAS), the single most preventable cause of mental retardation in the world, was done in disadvantaged communities in Soweto, Lenasia South, Westbury and Diepsloot. One of the aims was to develop capacity amongst community members to recognise maternal alcohol abuse and FAS, and in future to assist in the development and delivery of prevention programmes. Nine unemployed women with high school education were recruited through Not-for-Profit Organisations delivering social services in the areas. They received intensive counselling and interviewing skills training and education on FAS and alcohol abuse. They conducted 823 interviews with pregnant women in antenatal clinics to assess alcohol consumption, participated in organising and screening 830 school-entry children and the clinical examinations of 483 (including controls) of these children for FAS. Four community workers assisted by a mentor, conducted in-depth interviews with 39 mothers/relatives of children with a FAS or deferred diagnosis and 39 controls. Project challenges were: identifying appropriate interviewers; language diversity; gaining permission from Provincial health authorities and meeting requirements for knowledge and skill transfer and sustainability of prevention programmes; working with economically deprived interviewers and managing the relationship between income generation and the quality of the data; absence of infrastructure and resources; time management of project planning and capacity of individuals to deliver; intensive skilling process and varying individual competencies. Benefits were: transfer of skills for sustainable community awareness; credibility for future research projects; fulfillment of a moral imperative that academic research has a primary focus on prevention.
Learning Objectives: At the conclusion of this session the participant will be able to: Understand some key complexities and obstacles involved in coordinating a research project with community participation. Understand some key constraints in conducting research in third world communities. Evaluate the significance and value of community involvement in research projects. Anticipate obstacles and evaluate possible solutions when planning a research project involving community participation. Develop more effective research project plans that provide realistically for the facilitation and supervision required when working with community based research assistants.
Keywords: Alcohol, Community Building
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.