Understanding the barriers of parents to consent children's participation in a rural community school-based asthma research study

Introduction:

Determinants of parental consent in minimal-risk research studies vary by population and demographic characteristics. The goal of the study is to address the outcomes of asthma management in elementary school-aged children in a rural West Virginia (WV) population. According to the NCHS (2003), prevalence of asthma among children in WV was 11.1% compared to the national average of 8.9%. The higher rates may be due to factors distinct to rural communities such as low educational attainment, low health awareness and limited healthcare access. Despite the higher disease burden and disparities in rural communities, reasons for parents' reluctance to participate in research studies are not well understood.

Methods:

A minimal risk study to assess the level of asthma control using a 9-point questionnaire is being conducted in elementary school children in 2 rural WV counties. In the first phase, 69 asthmatic children and their parents were contacted and invited via mail, phone and in-person meetings to participate in the study. Of these, 22 parents (6% in one county and 26% in another) agreed to participate. Following the low response, post card reminders were sent home to solicit participation. In our presentation we will compare the socioeconomic status of each school district based on free and reduced services for students; the level of asthma control, school attendance and co-morbid conditions between participant and non-participant subjects.

Conclusion:

Socioeconomic barriers, health awareness levels and disease management of children are important indirect factors effecting parental consent for children's participation in research studies.