#26 Retention of the CHILD Study Manitoba Site
Britta Hoogervorst, Children’s Hospital Research Institute of Manitoba; Rishma Chooniedass, University of Manitoba; Allan Becker, University of Manitoba
Longitudinal research studies are important to determine risk factors for disease. However, keeping families engaged can be challenging. The CHILD Study is a longitudinal birth cohort study that enrolled 3495 families in 4 Canadian sites (BC, ON, AB and MB) starting before birth. Retention, the proportion of participants who continue a study, at the Manitoba site is 92% at 5 years. The goal of this study was to explore the experiences of parents participating in the CHILD Study at the Manitoba site, and better understand their reasons for enrolling, continuing to participate, and their future expectations.
A qualitative study was conducted using focus groups with an informal, semi-structured interview. Interviews were audio recorded and transcribed verbatim. The study ceased after data saturation was achieved. All data was imported into NVivo software. Codes were identified and collapsed into themes. The transcripts were reviewed by an independent researcher to verify consistent theme development.
Two focus groups (N=18 parents) were conducted by a facilitator not involved in the CHILD study. Three main themes emerged: Motivation, Involvement, and Commitment. Family history of allergy and beneficence were strong motivators to enroll in the study. Negative aspects, such as long questionnaires and difficulty with recall, were noted but were outweighed by positives, such as the supportive family-centered environment. Wanting to know study findings and collaborate with researchers lead to commitment. Findings revealed that parents initially were enticed by various motivators, and once involved their positive experience with the study and research staff contributed to commitment to the study, especially as parents believed they were a significant part of the research.
A positive experience and belief that research belongs to both participants and the researchers led to excellent long term retention.