Friday, September 27, 2002

This presentation is part of : Closing the Gap in Research: Recruiting and Retaining Children and Adolescents

Retaining Adolescents and Families in Longitudinal Research

Carol Dashiff, RN, PhD, professor and chair, PhD program, University of Alabama at Birmingham, Birmingham, AL, USA

Objectives: The objectives of this presentation are to: 1) analyze threats to subject retention in longitudinal studies of adolescents and their families, and to 2)propose strategies for enhancing retention in longitudinal research with adolescents and their families. Maximizing follow-up of subjects is critical in longitudinal research because numerous factors that impact subject attrition and retention operate repeatedly over time. When subjects are adolescents and their families, unique issues are superimposed on these more common factors influencing attrition and retention in longitudinal research. Strategies to address subject retention are essential to the success of the study.

Method: This paper reviews the sparse literature on retention of adolescent and their families in longitudinal research and discusses the threats to subject retention in a two year follow-up study of adolescents and their families funded by N.I.H., the FAD project (Families and Adolescents with Diabetes). Retention in long-term follow-up of adolescents and their families is feasible with planning.This paper will review what is known about retention of adolescents and their families in longitudinal research, with attention to healthy and chronically ill populations.

Findings: The unique threats to retention that are encountered when adolescents and their families are research subjects in longitudinal studies will be explored. These threats are related to developmental issues and the family system context. Threats and strategies will be described that pertain to research of both a descriptive or interventional nature. Methods for tracing subjects and insuring minimum refusals will be detailed. Included will be the selection of study design that enhances participation, engaging and enrolling study participants, and selecting and training interviewers/data collectors. Examples of threats to subject retention will be drawn from the author’s ongoing longitudinal study of adolescents with IDDM, funded by the National Institute of Nursing Research, in which adolescents and their families are being followed for two years with annual visits, starting at ages 11-15 until they are 13-17.

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