Conducting Research With an Adolescent Diagnosed With Fragile X Syndrome

In: Forum qualitative Sozialforschung: FQS = Forum: qualitative social research, Band 18, Heft 2

Abstract

In this article I address the reflexive nature of research undertaken when I investigated the presence of resilience found in an adolescent girl diagnosed with fragile X syndrome. The highlights of this article include specific challenges I experienced when conducting research with this adolescent and how I have adapted the process accordingly. These challenges involve the planning and preparation before data commenced; the influence of sensory integration, behavioral, cognitive and language characteristics of fragile X syndrome on an adolescent girl; and the aspects of ethical and rigorous research. I have also included recommendations such as guidelines for other researchers interested in conducting a similar study with adolescents affected by fragile X syndrome. I hope that with this article, other researchers would be provided with a better understanding of how to proceed with research that involves individuals with disabilities and more specifically, individuals diagnosed with fragile X syndrome.