A Mixed-methods Analysis of the Experiences of Participants Having Been Involved in Long-term Intervention Research Conducted in a Rural Area of Delhi.

Abstract

Background: Experience of participants in health research is very important as they are one of the major stakeholders. Yet, this still remains an unexplored area.

Objectives: The present study, which is part of a funded intervention research, aimed to assess the rate of dropout of the participants from the research, review the participant- and population-friendly activities incorporated in the research project that might have facilitated their participation and retention in the research, and also understand the experiences of the subjects having participated in the research for a long duration of nearly 2 years.

Materials and methods: The main research project was on childhood injuries, conducted on 397 children and adolescents belonging to 116 families, with participant interaction for 20 months. As part of intervention, adolescents were trained on first aid, road safety, and injury prevention. Data collection was by observation of the home environment and interview of subjects. The present mixed-methods study included quantitative and qualitative analysis done for the experiences of the participants in the Visual Analog Scale, along with their comments and suggestions. This data was obtained from feedback forms given to the families at the end of the main research project.

Results: The attrition rate was within acceptable limits of <5%. Participant- and population-friendly activities undertaken were training and awareness generation programs, poster and quiz competitions, services provided on priority, and incentives given. Participation was very high in all programs. Majority of the participants reported positive experience and shared the aspects on which they benefited, namely knowledge gained, skills developed, future use, and good experience. However, they also mentioned one important constraint they had felt, i.e. coinciding with their school schedule and the long duration of research.

Conclusion: Participation was very high with low attrition rate due possibly to participant- and population-friendly activities undertaken. Subjects and their family members conveyed having had positive experience while participating in the research.